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SUMMER 1991 


Volume 11, No. 2, Summer 1991 

Governors State University, University Park, IL 60466 - 3193 

Published under the auspices of the provosts office, 
© 1 991 governors state university and helen hughes 

ISSN 0736 - 4733 


Helen E. Hughes, Editor 
Suzanne Oliver, Art Director 
Barbara Conant, Library Resources 
Nirmala Cano, Managing Editor 
Lynne Hostetter, Word Processing 
Linda Kuester, Word Processing 
Lynn Ann Lindvig, Editorial Consultant 
Priscilla Rockwell, Editorial Consultant 
Emily Wasiolek, Editorial Consultant 
Theresa Rooney, Editorial Assistant 
Sally Petrilli, Editorial Consultant 
Judy Panko Reis, Guest Editor 


Glenda Bailey-Mershon, Illinois NOW/National Organization for Women, Oak Park, IL 

Donna Bandstra, Healthgroup International, Sherman Oaks, CA 

Margaret Brady, Social Sciences, Homewood, IL 

Rev. Ellen Dohner Livingston, Religion, Unitarian Society of Ponoma Valley, CA 

Rita Durrant, League of American Pertwomen, Doylestown, PA 

Deborah Garretson, Counseling, Muncie, IN 

Temmie Gilbert, Theatre/ Media, Governors State University 

Linda Grace-Kobas, Journalism, University of Buffalo, NY 

Harriet Gross, Sociology/Women 's Studies, Governors State University 

Helene N. Guttman, Biological Sciences, Bethesda, MD 

Bethe Hagens, Anthropology, Governors State University 

Barbara Jenkins, Psychology, Governors State University 

Betye Saar, Fine Arts, Hollywood, CA 

Sara Shumer, Political Theory, Haverford College, PA 

Rev. Lynn Thomas Strauss, Religion,Women's Studies/ Parenting, Oak Park, IL 



3 About our Guest Editor HEH 

4 Introduction: Swimming Upstream: Managing Disabilities Judy Panko Reis 

5 Acts of Creativity, Acts of Love: Mothering With Disabilities Anne Glaser Brentan 

11 How We Won Wheels and Rails Sharon Lamp and Julie Marks-Walberer 

14 Three Mothers of Spina Bifida Children Joyce Malo Mikotowicz 

16 New Territory: Creativity and Brain Injury Wendy Heller 

19 Adaptive Technology and the Release of Human Potential Margaret C. Pfrommer 

22 Staying in Step Gloria Hess Schreiber 

24 Butterflies Arlene Innmon 

25 Artist's Statement Arlene Innmon 

26 Dancing Through Fear Holly Hudnut Halliday 

29 Touching the Rainbow: The Art of Josee Andrei Barry Birnbaum and Judy Panko Reis 

31 "My Osprey" Dave Matteson 

32 "Helicopters" Glenda Bailey-Mershon 

33 Book Review, Seeing Voices by Oliver Sacks Reviewed by Lynn Dee 

35 Bibliography: Women and Disability Theresa Rooney 

37 Ads 

39 Announcements 

43 At Last! An OB/GYN Clinic for Women With Special Needs Judy Panko Reis 

45 Editor's Column Helen Hughes 


This issue 
printed on recycled paper 

The Creative Woman is published three times a year by Governors 
State University. We focus on a special topic in each issue, presented 
from a feminist perspective. We celebrate the creative achievements of 
women in many fields and appeal to inquiring minds. We publish 
fiction, poetty, book reviews, articles, photography and original graphic 

Cover photograph: Marca Bristo 
with daughter Madeline (on lap) 
and son, Sammy (on left), 
photographer: Brooke Hummer. 




Judy and I began our joint venture on this special 
issue in March 1989 after we met at a Chicago 
Women in Publishing event. We hit it off immedi- 
ately. Judy's intelligence, warmth and spiritual 
strength were shining through and it was clear 
that we were embarking on a partnership that 
would be educational for us both. We decided to 
focus on the various ways people overcome, adapt 
to, learn to accept, or transcend the destiny fate 
has handed them. Here you see the result of Judy's 
two years of writing to, talking with and cajoling 
women with various disabilities, who live in 
Maine, Haight-Ashbury, or somewhere in-be- 
tween, to share their stories with us. You will meet 
two blind artists (one blind from birth), a deaf 
writer/photographer, a quadriplegic choreogra- 
pher, a quadriplegic computer specialist, disabled 
Moms describing how they care for their babies, 
mothers coping with disabled babies, an HIV 
positive mother, and brain injured artists. They are 
an astonishing and awe-inspiring array of ex- 
amples of human resilience and creative response 
to challenge. It is a privilege to present them to 
you in these pages. 

Judy herself (see Winter/Spring 1991 issue of 
TCW, page 37) has come a long way since she was 
bludgeoned and left for dead on a beach in Hawaii 
eleven years ago. 

She is finishing her MSC (Master of Science in 
Communication) degree researching electronics 
communication networks at Northwestern Uni- 
versity, is a consultant at the Rehabilitation Insti- 
tute, and does organizational writing and research 
for Pierce and Associates, a law firm specializing 
in real estate law. Judy recently celebrated her 
40th birthday at Buddy Guy's Legends Blues Club 
with her husband, Shelly, and a party of sixty 
friends. Beyond her remarkable recovery, she has 
achieved a full and fulfilling life and has found a 
way to use her talents and energies on behalf of 
the disabled. 

Judy Panko Reis 




There is a hint of irony for most of us chronicled in this issue of The Creative Woman on managing 
disabilities. Our ability to craft new meaning into the way humans think about routine life activities 
derives in part from the creative tension we experience in our everyday swim upstream against the 
disabling flow of the status quo. 

Our stories are simple. They reveal us to be 

neither heroes nor victims, but ordinary women. 

We are persons with physical and sensory 

limitations, disabled primarily by the attitudinal 

and physical barriers thrust upon us by our environment. 

Though frequently frustrated in our efforts to overcome barriers, 
we continually endeavor to sculpt tools that will enable us to 
contribute to the fabric of American life in roles that reflect not 
only a diversity of human accomplishments, but also in the 
colorful collage of processes we invent to meet them. 

The signing of the American with Disabilities Act into law by 
President Bush last summer was a stunning example of the 
success of our collective attempt to transcend many of these 
barriers. A jewel shaped largely by our own design, the ADA adds 
to the wealth of American life by offering those of us with 
disabilities in mobility, vision, speech, hearing, and learning as 
well as persons with AIDS, opportunities to shoulder the risks 
and responsibilities inherent in everyday life. By mandating 
equal access to private and public accommodations, employment, 
telecommunications, and transportation, the ADA enables us to 
contribute to the mosaic of an enlightened American culture. 

Within these pages you will discover some of the ways in which 
women are restructuring current images of how persons 
communicate with others, move from one place to another, 
nurture children, mold relationships, manage careers, and give 
expression to dreams. 

You will also explore a link that has fascinated me for years; the 

relationship between disability and creativity. As a graduate 

student studying brain organization, I was introduced to the idea 

that one's ability to tolerate ambiguity could serve as a measure of 

creativity. Thus, it seemed to me that disabled persons living in 

cryptic worlds charged daily with uncertainties and ambiguities may be compelled to make sense of 

this amorphous twilight by transforming it into a splendor of unique creations. 

Essentially that is what this excursion upstream is all about - women shaping routine uncertainties 
and life situations circumscribed by ambiguity into creative acts that empower them and others to 
transcend disabling barriers. 

Judith M. Panko Reis 
Guest Editor, Summer 1991 

Editor's Note: Although the passage of the ADA is a great victory, equal opportunities for the disabled are far from secure 
due to the need for regulations delineating specifics of how the Act will actually impact American businesses and 
institutions. Needless to say, commercial enterprises and some transit groups will do their best, as they have in the past, to 
ensure that our swim continues to be upstream. Come join us in our never-ending quest to create the buoyancy required to 
float freely in the currents of the mainstream. 


Anne Glaser Brentan 

With the rise of the independent living movement 
during the 1970's, and the subsequent push for 
disability rights, more and more women with 
disabilities are choosing to have families. The 
challenges they face in becoming parents are 
greater than those faced by able-bodied mothers, 
but they have found ways to make it possible. 
Marca Bristo, Sharon Haines, Judy Panko Reis, 
and Clarinda Valentine are four such individuals. 
All mothers with acquired mobility limitations 
and all with young children, these women share a 
host of parenting concerns. Some are issues 
specifically related to their disability, but many 
are issues common to all women and mothers, 
disabled and able-bodied alike. 

It is not unusual for a woman to experience 
uncertainties at the thought of becoming a mother. 
Indeed, the idea of being responsible for someone 
from birth to adulthood can be an awesome 
prospect. Women with disabilities share an added 
dimension to these concerns: how will they care 
for a child given their own limitations? 

Marca Bristo, who was paralyzed from the chest 
down in a diving accident, never considered not 
being able to have children just because of her 
disability. But once pregnant, she found herself 
concerned about a variety of potential problems. 
What would she do when her child stood in a 
corner beyond the reach of her wheelchair and 
taunted "na-na-na boo-boo"? ("And they do that", 
Marca says). The President of Access Living, a 
non-residential center for Independent Living in 
Chicago, Marca was fortunate to have people in 
her life with disabilities similar to hers, who had 
already dealt with many of the issues she faced. 
She had people she could talk to about her 
questions and concerns, and role models to look at 
and say, "If they can do it, I can do it". 

Judy Panko Reis had similar concerns, but unlike 
Marca, she had no role models from whom to get 
support. A victim of violence, Judy sustained a 
head injury eleven years ago causing partial left 
sided paralysis of her arm and leg as well as 
visual/perceptual deficits. Although ambulatory, 
she has difficulties with balance and is unable to 
stand for long periods of time. When she married 
three years after her injury, the thought of taking 
care of a child overwhelmed her. She was still 

learning to take care of herself. "I had a 
fundamental driving fear about having a child and 
that would manifest itself in things like 'I can't 
braid hair; I can't tie a shoe; am I ever going to be 
able to get out with a baby?' " She tried in vain to 
find other mothers with disabilities similar to hers 
to talk to, and although she had the support of 
family and friends, she remembers feeling very 



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Marca Bristo with daughter Madeline (on lap) 

and son Sammy (on left). Photographer: Brooke Hummer 

Another area of particular concern shared by 
many women with disabilities is how their bodies 
will respond to pregnancy, labor and delivery- 
Sharon Haines, who was left paralyzed from the 
waist down after a car accident in 1984, initially 
worried if spending so much time in a wheelchair 
would affect the course of her pregnancy. She 
found it would not. Judy Panko Reis worried 
about maintaining her already fragile balance as 
her body grew bigger. Her doctor told her that 
since weight gain during pregnancy was a gradual 
process, her body and her balance would be able 
to adjust accordingly. That is exactly what 
happened. On the whole, both women enjoyed a 
relatively problem-free pregnancy and no 
particular complications during labor or delivery. 
Sharon is the mother of a son, Joey, almost two 
years old. Judy's son, Lewis, is four years. 

Marca Bristo faced a considerably more difficult 
situation during the course of both her 
pregnancies. Through her own research early in 
the first pregnancy, she discovered that the high 

level of her spinal cord injury put her at risk for 
some serious complications, one of which was 
hypereflexia — a condition which can cause a 
dangerous elevation in blood pressure. She 
arrived at her initial obstetric visit armed with 
articles discussing this particular risk and asked 
her doctor to read them. 'That started a dialogue. 
The doctors were wonderful in that they didn't 
come at this as if they knew it all. They used me 
as part of the team. They respected the fact that I 
knew more about my disability than they did. 
And they knew enough about spinal cord injury to 
know that no two are the same. So I felt that my 
medical treatment was very individualized." One 
of the founders of the Independent Living 
Movement in Chicago, Marca believes strongly 
that if one is knowledgeable about one's own 
needs, he/she will be listened to by others. "To 
the extent that we empower ourselves, others go 
along with us. To the extent that we allow 
ourselves to be passive victims, we will be treated 
that way." Although labor and delivery were 
difficult, she was not deterred from having a 
second child two years later. Her son, Sammy is 
now almost three and her daughter, Madeline is 
seven months. 

The importance of having physicians and other 
professionals with expertise in caring for women 
with disabilities is one of the reasons The 
Rehabilitation Institute of Chicago has opened an 
OB-GYN Clinic to service the disabled population. 
Reports of problems with some perinatal 
professionals and settings are not uncommon. 
When Marca's first child was born, the hospital 
had no accessible bathrooms. Although 
accessibility was not an issue for Judy, who is 
ambulatory, she found the instructor of the infant 
care classes unsupportive and uncomfortable with 
her different needs. In addition, she noted that 
even the Occupational Therapist she consulted, 
though supportive, was not particularily well 
equipped to instruct her on the pressing issues of 
caring for a baby with the use of only one arm and 
unstable balance. 

For women with disabilities who want to be 
mothers, but cannot bear children — whether 
because of the disability itself or because of other 
non-disablity related factors — adoption may be an 
alternative. However, prevailing misconceptions 
about disability make this a sometimes 
formidable, though not impossible, challenge. 
Clarinda Valentine, a single mother, defied 
numerous assumptions when she adopted her first 
child seven years ago. 

"For a long time," she says, "the assumption was 
that if you were disabled, you weren't supposed to 

have children. And if you did, then you stayed at 
home, and the other spouse became the active 
parent in the child's life." Clarinda, who is 
employed full-time as the Regional Program 
Consultant for The Public Health Service in 
Chicago, suffered a severed spinal cord when she 
was shot in the back at age fifteen. She uses a 
wheelchair, but is able to stand and walk for short 
distances with the aid of braces and crutches. 
Although she was confident about her ability to 
parent, the state authorities with whom she had to 
deal in order to complete the adoption, were not. 
They found it difficult to accept the fact that a 
single woman with a disability could take care of 
herself and a child too. It was even harder for 
them to accept the fact that such a woman could 
also have a full-time job that earned enough to live 
independent of public funding. Clarinda persisted 
in her efforts to convince them, however, and the 
adoption of her son, Shannon, was eventually 
approved. Two years later, she fought the system 
again and was able to adopt a second child, a 
daughter, Islya. 

Clarinda Valentine with her adopted children, 
son, Shannon and daughter, Islya. 

Determining one's need for help in the house after 
a baby is born can be an important consideration 
for any new mother. It is not always easy, 
however, for a woman with a disability to come to 
terms with that level of dependency. 

As Judy points out, "Part of the independent 
living movement includes making decisions about 
your independence. We have to make choices 
about what we can and will do, where we'll put 
our energies. Having someone in to help us is a 
way to enable us. We have to look at the help we 
need as an enabler." 

Because Judy essentially has the use of only one 
arm, and because maintaining her balance while 
walking or standing is always an issue for her, she 

and her husband knew that in-home help would 
be essential if they were going to have children. 
Judy has found her child care assistants to be 
invaluable teachers both for her and for her son, 
Lewis. She has hired women who are mothers 
themselves, and finds this has made a difference 
both in their ability to help her, and in their 
sensitivity to her mothering issues. 

Marca also chose to have help with child care, 
both for the support it would give her, and 
because she knew she would be returning to work. 
Additionally, issues during her first pregnancy 
and immediately following, changed her level of 
independence for a period of time and help 
became more necessary. "One of the concepts of 
independent living is that your level of 
independence is not static. Your needs change as 
your circumstances or your disability changes. 
This was one of the first times that I had to deal 
with a changing level of function." A serious 
component of in-home child-care assistance, 
however, is the current lack of public funding 
which puts it out of reach for the low-income 
disabled population. 

Once the baby comes home, many of the concerns 
about handling the tasks of day-to-day 
motherhood begin to diminish as mothers 
discover ways to adapt to their baby's ever 
changing needs. "You learn pretty quickly", Judy 
says. "You just kind of end up having a natural 
instinct on the spot — of things that you can try 
together. You have all these anxieties and there's 
no way to figure out too much in advance, 
because the child changes so much and you just 
develop a feel for the situation. I really think that 

Sharon Haines, who uses a wheelchair but has the 
full use of her upper body, found taking care of 
her son, Joey, much easier than she had thought it 
would be. She had been concerned about how 
she would lift him without falling forward in her 
chair, and how she would bathe and dress him. 
Weighing only 5Vi pounds at birth, he was easy 
for her to handle. As he got bigger, she found she 
readily adapted. When Joey was first born, Sharon 
kept him tightly swaddled so he was easier to pick 
up. She did all of his changing and dressing on 
her lap, and often still does. "Even now that he's 
getting so big that his head is starting to hang 
over, it's natural for him, since that's the way I've 
always done it." She bathes him in the kitchen 
sink, an easy height for her to manage since her 
apartment in Chicago has been adapted for 
wheelchair accessibility. 

Clarinda who, like Sharon, has full upper body 
strength, used to change and dress her children, 

Sharon Haines and son, Joey. 

who are now six and four, on her lap, a bed, or 
table. Standard changing tables, she points out, 
are too high to be useful to parents in a 
wheelchair. She also used the kitchen sink to 
bathe her children when they were little. Once 
they were old enough to sit up and stand 
independently, Clarinda used their natural instinct 
to climb to assist her in getting them in and out of 
the tub. For the most part, Clarinda has found she 
can take care of things on her own. "Sometimes it 
takes awhile to figure out how I'm going to do 
something, but I eventually get it done." 

Marca remembers how the thought of taking care 
of an infant when she came home with her first 
child was terrifying. But once she hit mothering 
head on — learning to change and bathe the baby — 
she found she could manage. "Everything took a 
lot longer, but I could do those things." She felt 
strongly about wanting to nurse both her children 
and was glad she did. However, she experienced 
considerable physical discomfort related to the 
hypereflexia and to muscle strain and fatigue from 
holding the baby and says it was, in fact, a relief to 
stop. Marca, who has the use of her hands and 
arms but has some limitations of upper body 
movement and strength, found the easiest way to 
lift her children when they were tiny was to slide 
her forearms under their bodies with her elbows 
supported. Once they were several weeks old, 
she would lift them up by the front of their 
clothing. She learned this from a friend — a 
quadriplegic — who told her about a time he was 
home alone with his baby and thought he smelled 
smoke. His child was in a one-piece sleeper and 
so he was readily able to pick him up with his 

teeth and get him out of the house. Ever since, 
Marca has always dressed her children in one- 
piece suits, or coveralls when she is home alone 
with them. She used a snuggly to carry her son 
around when he was a baby, but since her 
daughter would not tolerate such an arrangement, 
Marca carried her in a pillow on her lap. Marca 
sometimes uses a power wheelchair which affords 
her even greater independence. It has proven to 
be a helpful alternative when she is out alone with 
both children. 

Judy also remembers being terrified at the 
thought of having to diaper, bathe, and dress her 
newborn. But she learned early on that Lewis was 
less fragile, and far more flexible than she had 
assumed. The ways she handled him were not 
harmful, even if they didn't always accommodate 
the baby in the traditionally specified manner. 
Keeping the baby on a higher surface such as her 
bed or his crib made it easier for her to scoop him 
up, and she was able to carry him from room to 
room indoors. As he got bigger, she picked him up 
around the waist. She found diapering most 
easily accomplished by keeping a stack of already- 
put-together diapers on hand. Then she could slip 
them up over Lewis' legs like pants. However, 
since diapering, dressing and bathing her son 
were such arduous, time consuming tasks for her, 
she left these to others as much as possible. 
Nursing her baby was an extremely important 
time for Judy, providing the opportunity for a 
more relaxed intimacy and bonding between 
mother and son. Playing with Lewis down on the 
floor, a place where Judy is very comfortable and 
secure, also gives her the same rewards. 

The staff of Through the Looking Glass, a 
Berkeley, California agency that focuses on 
preventive services, professional training, and 
research with the disabled population, has 
documented the fact that babies adapt very early 
to their physically disabled mothers, and that 
often these mothers display a kind of cueing that 
facilitates this process. Marca noticed that within 
weeks of their birth, both her children began to 
tuck their head and legs as she approached to lift 
them and that they would stay this way until the 
lift was completed. She always approached them 
talking, telling them what she was about to do. 
The sound of her voice may have become a signal 
for their adaptive response to her lift. Sharon 
noticed a similar adaptation once her son started 
to crawl and it was harder for her to lift him up off 
the floor from her wheelchair. He would tighten 
or "ball up" his body to help his mother with the 
lift. Sharon was then able to rest him on her feet, 
and slide his tightened body easily up to her lap. 

His adaptation to this lifting, and Sharon's 
breaking it down to manageable steps to complete 
the process is another example of this parent/ 
infant collaborative process. As the children get 
older, such adaptations take on different forms. 
All the mothers noted that their children knew 
very early to approach them on their stronger side 
if they wanted to be helped or lifted up. Judy has 
found that, unlike her friends' children, her son 
never puts his arms up towards her to be picked 
up when she's standing. Yet he has known from 
early on that when his mother is seated, and he 
comes to her, she will pick him up and hold him 
on her lap. Clarinda and Marca both commented 
on their childrens' apparent "extra sense" — at a 
very early age — that seemed to dictate generally 
more cautious, cooperative behavior when alone 
with their mothers as opposed to when someone 
else was around. This is particularly evident 
when they are out somewhere alone, but is also 
true, though to a different degree, when they are 
alone at home. 

As children become more mobile, issues of safety 
become pressing concerns for which every parent 
must seek comfortable solutions. For moms with 
disabilities, these solutions will necessarily be 
influenced by their physical limitations. The most 
difficult period of early parenting for Marca was 
when her son, Sammy, began to "scoot", but 
before he was standing. "When you're in a 
wheelchair, you can't grab them [because they're 
down too low] and they're moving all over the 
place, getting into things. I was worried that I 
would lose track of him. He was a very active 
little boy." There was a stage before he was as 
intellectually developed as he is now, when Marca 
did not take him out much on her own due to her 
worry that he might take off. Now that she can 
depend on him to stay close and listen to her, she 
is comfortable taking him out alone anywhere. 

Clarinda did take her children out alone even 
when their behavior was unpredictable, but only 
felt comfortable doing so if she used a child 
restraint. "I know that sounds cold and cruel," 
she says, "but I could go anywhere and I felt 
comfortable knowing they couldn't go any further 
than I allowed them." She used different length 
restraints; a long one if they were at the park 
versus a shorter one if they were in a Mall or a 
crowded area. "I did this until I felt comfortable 
knowing that when I called them, they would 

Anyone who is a mother will attest to the fact that 
children are quick to recognize their mother's 
limitations and /or weaknesses, sometimes 
capitalizing on them to test the limits of their own 

behavior. Mothers in wheelchairs report that it is 
not uncommon for their children to lie flat on the 
floor, crawl under a table, or find some other 
equally inaccessible place just to avoid discipline 
or having to do something they don't want to do. 
Marca found this behavior particularily evident 
during her son's terrible twos. "For parents, 
disabled or not, this is a very difficult period. It 
requires patience beyond belief. And I think it's 
harder with a disability because you really are face 
to face with your limitations," she said. Marca 
feels it is important for parents with disabilities to 
be able to admit — to themselves and to others — 
that some of the issues with which they must deal 
as a parent are harder than they would be for an 
able-bodied mother or father. She feels there's a 
"tendency amongst us, as disabled people, to 
compensate our disabilities by diminishing the 
significance of the difficulty." And it is important, 
Marca stresses, that disabled parents give 
themselves permission to acknowledge that extra 

Judy finds her son, at four, testing the limits of 
discipline more and more. She tries to give him 
choices, where possible, and finds this often helps 
to shape positive behavior, but not always. She 
has found it important to have a contained, safe 
room where he can go for "time out", so he knows 
that he doesn't have it over her physically. With 
an outside lock on his door, Judy can, if necessary, 
control when he is able to come out. Because she 
cannot easily remove him from a given situation if 
he is in danger, she does not often take him out 
places by herself. She will, on the other hand, go 
to friends' houses, where she knows she can get 
help with him if she needs it. 

At the same time these children are testing the 
limits of their own independence, they seem to 
possess an understanding of their mothers' special 
needs, and are generally accepting and matter of 
fact about them. When Sharon is sitting on the 
couch and her son wants something somewhere 
else in the apartment, he will pat the seat of his 
mother's wheelchair and pull her arm towards it, 
to get her to come with him. "He knows I don't 
walk; he knows this is how I get around." Judy's 
son will take his mother's hand when they cross a 
street together, not simply because he's been 
taught to do it for safety reasons, but also because 
he knows that it gives his mother the slight 
support she needs to step up and down the curbs 
without losing her balance. Marca has found that 
when her son wants to do something, and she just 
says "no", he fusses and carries on. But if she says 
'That's too difficult for Mommy to do", or "that's 
too tall", he'll say, "We'll ask Daddy". Clarinda 

has always been open and unselfconscious with 
her children about issues relating to her disability, 
and consequently they are too. "Some of their 
friends might say some things to them, and they'll 
say, 'My mama's in a chair, she can't do that.' But 
it's not an embarrassing thing. And I don't want it 
to be." 

The issue of accessibility, which is important to all 
persons with disabilities, seems to loom even 
larger when it affects the parents' interaction with 
their children. "When it's the natural environment 
limiting me," Marca explains, " and there aren't 
ready ways to correct it, I'm not angry about it. I 
may be a little sad or disappointed. But when it's 
the built environment that keeps me from being 
the kind of Mom I want to be and sharing in my 
kid's development, there's nothing that makes me 
more angry." She described taking Sammy to a 
children's theatre with her husband, only to find a 
flight of stairs that prohibited her from joining 
them. The militant side of her wanted to leave. 
But the mother side knew how much her son 
would enjoy the experience. The mother side 
won, and she waited in a nearby coffee shop until 
the performance was over. It is clear that despite 
efforts over the past twenty years to make our 
physical environment more wheelchair accessible , 
there is still a long way to go. There are schools 
that remain inaccessible to parents in wheelchairs, 
and yet require, as part of their programming, that 
parents participate in the classroom at regular 
intervals. There are hospitals, theatres, 
playgrounds, and even neighborhood drop-in 
centers — where parents can go with their children 
for much needed companionship and support — 
that remain inaccessible. 

Accessible transportation is also vitally important 
to the disabled, particularily for mothers like Judy, 
whose visual/ perceptual difficulties prohibit her 
from driving. Although she lives near good fixed 
transportation in a Chicago suburb, it is not yet 
accessible for the disabled, and Judy continually 
struggles with the inadequacies of the local para- 
transit. She has found that it often restricts her 
ability to get herself to work appointments and to 
get her son to school or the doctor. She insists that 
she must, therefore, continue to stay vigilant about 
all issues concerning accessible mass transit. 

What aspect of parenting do these moms find the 
most difficult? "There are all these little phases" 
Marca says. 'The most frustrating thing for me has 
been that the kids have significantly limited my 
independence. Other mothers say, 'Oh yeah, me 
too'. But it's not the same. We've gotten 
accustomed to one level of immobility related to 
disability. We've adjusted to that. You throw a 

child into the picture and it throws it up for grabs 
again. As the developmental phases of the kids 
change, your own limits change, and your own 
freedoms or lack thereof change. You have to be 
constantly fiddling around with new techniques to 
maintain your own independence at the same time 
that you're dealing with your children's 
dependence. So these issues of dependence and 
independence can be very frustrating." 

Judy confirms this frustration. "I think the biggest 
issue for me — always has been and continues to 
be — the real inability to get out by myself with a 
child that is dependent on me. You really get cut 
off from the interpersonal, social bonding with 
other mothers. It isolates both the child and the 
mother." One of the things that prompted Judy to 
move out to the suburbs was the hope that on less 
busy streets and flatter terrain, she would be able 
to get out more frequently with her son in the 
stroller and would thus have the opportunity to 
meet other moms in the neighborhood. This 
proved to be true. Now, using the stroller to help 
control her balance, Judy is able to visit friends 
who have children the same age as hers 
completely on her own. "It's just such a landmark 
for me!". 

Sharon finds that being in a wheelchair imposes 
limits on the types of interactions she can have 
with her child — now and in the future — and that 
is the most difficult limitation with which she has 
to deal. Other mothers also struggle with this 
issue. Marca tries to cope with these feelings by 
mentally ruling out the things she knows she 
cannot do with her children, but admits that 
"when I'm not prepared for it, that's when it gets 
to me. Those times are really devastating. You feel 
like you're short-changing your children on the 
one hand. On the other hand, you're getting short 
changed." With kids, Judy points out, " there 
will probably be a whole new set of things we're 
just going to have to write off. You don't know 
what they're going to be, but they'll be there." 

Dealing with issues like these, as well as finding 
creative ways to handle the challenges of 
parenting are some of the many reasons these 
moms point to the need for increased peer 
support. The opportunity to talk to other disabled 
parents, to share information and find ways to 
adapt solutions to common issues to their own 
personal needs, is crucial. Agencies around the 
country are beginning to incorporate such 
parenting networks, and more are sure to follow. 
Clarinda has been a volunteer for the National 
Spinal Cord Injury Association's Illinois Section. 
She counsels women who are considering having 
or adopting a child, and women who have had 

children before becoming disabled. She wants 
these women to know that they can be good 
mothers. "It may not always be easy. But it can be 
done." She often takes her children, and even a 
friend's baby, to demonstrate how to do certain 
things at the different stages of a child's 
development. When counselling disabled women 
who tell her that their hopes of ever mothering are 
gone, she tells them, "Oh, no, I have two children 
you can practice on!" "That support," Clarinda 
says, "makes a world of difference". 


Kirschbaum, Megan. "Parents with Physical Disabilities and 

Their Babies". In Zero to Three, 1988. 8-15. 

Through the Looking Glass, 801 Peralta Avenue, Berkeley, 
CA 94707. 

Anne Glaser Brentan is a speech/language pathologist, free- 
lance writer and mother of two sons. She lives in Wilmette, 



Sharon Lamp & Julie Marks-Walberer 

This is a true story, a saga of two women and their 
struggle for dignity and independence. Initially 
they had little in common except that they both 
were career women with disabilities. As such, 
their careers were threatened due to the fact that 
there was a severe lack of public transportation 
that was accessible to the disabled, thus they had 
to resolve their dilemma or else their jobs would 
be in jeopardy. The following is an account of how 
these women, with the help of others in similar 
predicaments, effected changes in the status-quo. 

It all began as a typical day for Julie. After 
scurrying around for several hours as she 
prepared her family and herself for another 
routine day, Julie finally saw her husband off to 
work and her kids off to school. At last, she was 
ready to leave for her own job. Today she had to 
make a side trip to the doctor before she went to 
work. She had been having what seemed to be a 
minor problem. This problem was to explode into 
something that would alter every aspect of her life. 
The doctor found that she had a benign brain 
tumor which needed immediate removal. As a 
result, Julie was left severely disabled. 

Initially, she was devastated. Her life seemed 
totally destroyed. Everyday activities became 
difficult, complicated. Routine tasks such as 
changing the sheets, putting the clothes into the 
washing machine or climbing stairs became 
monumental projects. The challenge of these 
previously simple tasks became an impossibility 
for her now due to her metamorphosis from a free 
person to a prisoner. In time, Julie overcame these 
daily challenges and her thoughts turned towards 
returning to her career in occupational therapy. 
This is where her efforts to resume a normal 
lifestyle came to a grinding halt. 

No longer able to drive, Julie turned to public 
transportation only to find that Chicago's public 
transit systems utilized stair-mounted equipment 
which she was unable to use. Lift-equipment 
vehicles were not even in existence! How could 
she put her professional life back in order if she 
couldn't even get to work! While searching for an 
answer, she met Sharon and the following is an 
account of what happened when the two joined 
forces to tackle the powers they were up against. 

After our first conversation, we recognized that 
we were sisters in our struggle. Sharon was a 

Leslie Burgess 

recent college graduate with a degree in 
accounting. She had a slowly progressive 
neuromuscular disorder. It was the effect of the 
disease on leg muscles which made it difficult and 
often impossible to raise her body from one plane 
to another. Sharon, just as Julie, had relied upon 
Chicagoland's commuter rail service (Metra). But 
things were different now - we were different 
now. We were like square pegs trying to fit into 
round holes. 

It seemed as though the world wasn't ready for us 
- Metra wasn't ready for us. They were not 
prepared to deal with us. We were disabled 
people who had known what it was like to enjoy 
their mainline service. This was a service which 
boasted of a 98% on-time performance and didn't 
have to negotiate with traffic or weather, a service 
which could be counted on. 

We were not about to accept the totally inadequate 
service that this same provider made available to 
the disabled public. This so-called "special" 
service consisted of vans which, in theory, existed 
to provide a comparable means of public 
transportation to riders with disabilities. In reality, 
it was a total failure. The program was so severely 
underfunded that it could only provide 52 round 
trips a day to a population of over 200,000 riders 
and rides had to be scheduled a day in advance 
and were often hours late or never arrived at all. 
Unlike the mainline service, we had no service on 
Sundays or after 7 p.m. In other words, public 
transportation provided to the disabled could not 
be relied upon and our lives had to be severely 

In an attempt to address these issues, a few of us 
fired off a letter to Chicago's transit authorities, 


demanding a prompt resolution to this matter. We 
signed the letter "T he Concerned Rail Corridor 
Users" (CRCU) and thus this became the group's 

As word of CRCU and its objectives spread 
throughout the disability community, more people 
reporting similar problems surfaced. We held our 
first official meeting in May of 1988. Attendees 
included housewives, an accountant, an engineer, 
an occupational therapist, a writer, a corporate 
librarian and a student. We all had one thing in 
common - the need to use public transportation to 
get to jobs, schools, recreation, churches or 
families. We were people who were currently 
being denied this right for one basic reason - we 
were disabled. 

The transit authorities' response to CRCU's initial, 
and all future communications was that there 
wasn't enough money to improve service for 
disabled riders. In addition, we were informed, in 
no uncertain terms, that public trains didn't have 
to provide service to disabled riders as there were 
no federal regulations requiring this. We were to 
hear these two responses over and over again as 
we pursued our cause. 

We didn't buy either of 

1 their excuses. We 

knew that Metra 1 had just spent half 
a million dollars ^^ designing an 

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such a project S$0^!L 

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contention that there were no funds available to 
improve the service. 

Further adding to our skepticism about Metra was 
their reference to our service as a social service. 
You can imagine how this made us feel - as 
though we were being forced into child-like roles 
with Metra as our patronizing parent. It was 
humiliating to be perceived as a drain to society 
rather than the integral elements that we are. 

Then came Metra's final blow. They announced 
that they were going to bar ambulatory disabled 
people from using the van service. Thus, people 
who could ambulate with the use of canes, 
crutches, walkers and braces were no longer 
eligible for Metra's transportation system for the 
disabled. However, these people were no more 
able to use the mainline service than wheelchair 
users. It was ironic that these same people who 
had spent so many months in rehabilitation 
learning to ambulate without a wheelchair, were 
now being shoved back in them - if they wanted to 
be eligible for public transportation. 

We will never know whether Metra made this 
decision out of arrogance or ignorance. In either 
case, since their decision affected the majority of 
the disabled (80% of the riders) they gave us the 
fuel that we needed to mobilize our troops and 
CRCU's task became clear. We had to educate and 
motivate the disabled public so that they would 
recognize their right to public transportation and 
be willing to fight for it. 

Our strategy was to publicize the discrimination 
we were facing. We felt that by raising public 
awareness of this issue we could also garner 
public support and along with that support, 
power. One of the ways we gained publicity was 
by launching a series of demonstrations, each one 
carefully planned and executed to symbolize our 
issues. We utilized the communication skills of 
our members to formulate and then distribute 
press releases and editorial opinion pieces which 
were periodically printed in both of Chicago's 
major newspapers. 

We became vocal participants in both 
transportation board meetings and advisory 
committees. Armed with a consciousness of our 
civil rights and an understanding of the dollars 
and cents involved, we were able to expose the 
discriminatory attitudes and cost propaganda 
perpetrated by Metra. We provided input to the 
Chicago study on transportation for the disabled, 
which ultimately acknowledged the financial and 
operational practicalities of utilizing accessible 
equipment on transit services. 

We also notified legal authorities of our dilemma. 


With the assistance of the Chicago Lawyer's 
Committee, members challenged transit agencies 
under both the Illinois Human Rights Act and 
federal regulations. The latter action was quickly 
resolved in an out-of-court settlement which 
reinstated the rights of ambulatory disabled people 
to use the van service. 

In the midst of our various struggles with Metra, 
we were uplifted by the efforts of Chicago's 
disabled community who had won a victory over 
Metra's sister agency the Chicago's public bus 
authority, in a decision requiring the 
implementation of an accessible bus system within 
Chicago. This victory was to have a far reaching 
impact that extended beyond our local struggle 
with Metra and set a well-timed precedent in the 
national movement to help ensure passage of the 
Americans with Disabilities Act (ADA). 

The ADA is a piece of federal legislation which 
protects the rights of people with disabilities. 
Incorporated in this bill is the requirement that 
public trains be equipped with at least one 
accessible car per train within a period of five years 
and that all new equipment purchased after that 
time be accessible. As active supporters of the 
ADA, we were honored to accept invitations to 
attend the signing ceremony when the bill became 
law on July 26, 1990. It was the passage of the ADA 
which finally secured the rights of people with 
disabilities to access trains throughout the nation - 
including Chicago! 

Despite all the positive changes we have witnessed 
or participated in, our battle is far from over. As we 
wait for the ADA's regulations to be written, we 
continue to face the daily restrictions imposed on 
us by the current system. Tackling these concerns 
will require a continuing effort but we have more 
ammunition now that we have the full support of 
the public and the law on our side! 

Personal Statements 

Just as the caterpillar spins its 
cocoon and emerges as a beautiful 
butterfly, so did I. As of September 
1987 I was exhausted, withdrawn 
and inhibited. Then after one and a 
half years of working at an independent living center, 
coupled with the development of a grass roots 
advocacy group, I emerged as a totally changed person. 
I had turned exhaustion into enthusiasm, and 
inhibition into self-belief. Most of all I had come to 
realize that there is power within all people and they 
can, with the effort and persistence, develop this facet 
of themselves. (Julie) 

We engaged in this battle because of our very real 
personal needs. We soon realized that in representing 
ourselves, we were also representing the needs of 
many. It was this realization coupled with the total 
experience which empowered us as we evolved from 
individuals who were looking at personal factors to 
people who were able to envision a much broader 
spectrum of issues. (Sharon) 




Joyce Malo Mikotowicz 

For some pregnant women, an inner feeling, a 
"gut hunch," may tell them that something is not 
right. For others, the pregnancy may feel perfectly 
normal. But for every woman, there is the moment 
of devastation when she finds out that something 
is wrong with the fetus. 

second ultrasound, four people came into her 
room. "At that point I just kept saying, Will 
someone please tell me what's wrong?" Mary 
remembered. Finally the doctors admitted they 
weren't sure and prepped her for an immediate 
amniocentesis. The results showed Spina bifida. 

Mary and Larry decided against abortion. "One 
co-worker told me that she thought I should 
terminate the pregnancy," Mary remembered. 
"But I knew my baby wouldn't be mentally 
handicapped." Although Mary had not attended a 
Catholic church for years, she found strength from 
the church and from within herself. 

"I still couldn't help feeling Why me," admitted 
Mary. "I have a sister with Downs Syndrome and 
had worked with special needs children and I 
couldn't help feeling that I had already put in my 

Mary worked for the Easter Seal Association and 
wanted to call the Spina Bifida Association, but 
every time she dialed the number, she hung up. 
When she finally made the contact, the 
Association proved invaluable. She and Larry 
also took high-risk pregnancy classes, and found 
the doctors very supportive. 

Larry, Mary, David & Gerard Pritchard 

"It was horrible," said Mary Pritchard, when she 
found out that her unborn son had Spina bifida.* 
"I was ashamed. I thought God was punishing me. 
Even though it wasn't logical, I couldn't help 
feeling guilty. I thought about every day of my 
pregnancy and I wondered if I had done anything 

Mary and her husband, Larry, had suffered 
through a previous miscarriage, and had difficulty 
in conceiving a child. While having routine blood 
work done, the doctor noticed something that 
indicated the need for further tests. After the 

* Spina bifida is a birth defect resulting from 
abnormal development of the spinal canal with 
varying degrees of neurological impairment; more 
serious cases may involve total paralysis of the 
lower part of the body with incontinence, and 
sometimes an associated anomaly, hydrocephalus, 
adds mental retardation to the formidable medical 
and social problems facing these babies if they 
survive. The causation is unknown. Prenatal 
detection is possible in some cases by an 
examination of the amniotic fluid (amniocentesis). 
Spina bifida is a fairly common congenital anomaly, 
occurring once in 300 births. (Ed.) 


Manuela Lopez experienced an entirely different 
reaction from the medical community. It was her 
second pregnancy, and from the beginning she felt 
something was wrong. Doctors intimated that she 
was paranoid but her fearful feelings continued. 
They also refused to give her an ultrasound. 
Finally, in her 24th week of pregnancy, she had 
the ultrasound. Two weeks later, the Spina bifida 
diagnosis was confirmed. 

Doctors at the hospital kept insisting that she 
would not need a Cesarean section delivery. "I felt 
the attitude was, 'You're young, you can have 
another kid,'" Manuela remembered angrily. An 
intern at the hospital befriended her, and 
insinuated that some doctors were interested in 
using her vaginal delivery as a test case. Manuela 
finally changed hospitals and delivered her 
daughter, Luliana, by Cesarean section. 

Manuela did not know what to expect, but found 
the information and support from the Spina Bifida 
Association tremendously helpful. Family, friends, 
and church associates also helped her cope with 
her newborn daughter. 

Mary Aly had an 18 year old son, and felt her 
second pregnancy to be a gift. Her pregnancy 

Mary and Nura Aly, 1990 

appeared normal but in retrospect she remembers 
an "inner feeling." "I decided against an amnio, 
even though I was 38 years old," she said. "I 
already loved this baby." 

During her sixth month of pregnancy there was a 
period when movement stopped. But an 
ultrasound showed everything to be normal. At 
eight months the fetus dropped but did not turn. 
An ultrasound resulted in a Spina bifida 

"Everything happened so quickly, but I was 
devastated," Mary said. "I was so scared. I didn't 
know what my feelings would be. I started writing 
to help me get in touch with my own feelings." 

Mary is a news reporter for a Chicago radio 
station, and co-workers had been talking about 
her pregnancy on the air. "But I couldn't share this 
on the air, so I had to pretend that everything was 
just fine. It was horrible." 

Mary read everything she could find about the 
disease and found the medical staff to be caring 
and honest. The first thing she remembers hearing 
after her daughter's birth was her husband's voice. 
"She's so beautiful," he told his wife. They named 
their daughter Nura, which means "light" in 

Mary proudly says her husband, Nour, was 
unbelievably supportive through their experience. 
"I stayed at the hospital, but our daughter was 
moved to a different hospital for surgery. He 
stayed with Nura during the day and fed her my 
breast milk. Then he would come and stay with 

With prenatal diagnosis, parents can often decide 
whether to terminate a pregnancy. Whatever the 
choice, this congenital anomaly is never easy to 

Joyce Malo-Mikotowicz is the president of the Maine Group, 
Inc., which produces educational materials. Her adopted 
daughter, Beth will be 5 years old this fall. 

Raggedy Ann, 1988, Lynn Dee 



Wendy Heller 

In 1911 the well-known German expressionist 
painter Lovis Corinth suffered a massive stroke to 
the right side of his brain. His ability to speak was 
not affected by the damage, since, as is the case in 
most right-handers, language functions were 
handled by the left side of his brain. He did show, 
however, a profound tendency to ignore 
information on the left side of space, a common 
deficit after right hemisphere damage, often 
referred to as hemineglect. The problem did not 
stop him from painting, and over time, he 
gradually recovered from hemineglect. But his 
style of painting changed dramatically, becoming 
bolder, more expressive, and less representational. 
Nonetheless, he continued to demonstrate a 
unique, creative talent, undiminished by the 
trauma to his brain. 

The story of Lovis Corinth is not compatible with 
the view, often represented in the popular press, 
that the right side of the brain is more "creative" 
and "artistic" than the left. In fact, many skills go 
into the making of a work of art. Studies that have 
investigated the work of artists and other 
individuals with damage to the brain suggest that 
these special skills call upon the cognitive talents 
of the left as well as the right hemisphere. The left 
hemisphere carries out the execution of fine motor 
movements required to produce a work of art in a 
right-handed person, whereas the right 
hemisphere specializes in understanding complex 
spatial relationships. Typically, individuals with 
damage to one or the other hemisphere show 
different kinds of deficits, depending on the side 

Damage to the right hemisphere of the brain 
interferes with the ability to represent spatial 
relationships accurately, but these individuals are 
often able to reconstruct the details. Right-brain- 
damage also compromises the ability to distribute 
attention evenly and consistently across both sides 
of space, and these individuals tend to ignore 
information on the left side of space. Often, the left 
side of the page is ignored in their drawings, or 
objects are depicted with blurred, distorted, or 
missing features on the left. This tendency is 
particularly obvious in free drawings, but can also 
be seen when patients are asked to copy or 
reproduce a picture, sometimes even a very simple 
one like a flower or a clock. Drawings of right- 


brain-damaged patients also tend to be larger than 
those of left-brain-damaged patients, and are more 

In contrast, damage to the left hemisphere of the 
brain interferes with the representation of details, 
but the fidelity of the spatial relationships is more 
often maintained. Contrary to the popular myth 
that the right hemisphere is the most important 
part of the brain in producing art, Doreen Kimura 
and Robert Faust at The University of Western 
Ontario reported that left-brain damage, 
particularly to the anterior region, was associated 
with greater impairment in spontaneous drawing 
than right-brain damage. Left-brain-damaged 
patients' drawings were less recognizable, had 
fewer lines, and were smaller. The largest 
proportion of poor drawings came from patients 
with apraxia (difficulty in executing planned, 
coordinated motor sequences). These patients 
were impaired in almost every aspect of drawing. 
These results indicate that the specialized ability 
of the left hemisphere to plan and carry out fine 
motor movements is as much a part of the creation 
of art as the specialized ability of the right 
hemisphere to envision the patterns made by 
objects in space and time. 

Yet there is another dimension to making art, 
linked yet separate from cognitive and motor 
functions. Art is as much a language of emotion as 
it is a collage of skilled brush strokes and superb 
spatial relationships. As opposed to the linguistic 
medium, which relies on symbols to represent 
some referent, art conveys its message directly by 
arousing an emotional response in the viewer. A 
work of art is considered by Rudolf Arnheim in 
his book Toward A Psychology of Art to be 
meaningful when it evokes and gives form and 
sense to an affective state. In this capacity, art, as 
an integral part of ceremony, ritual, and social 
interaction, has filled emotional needs in human 
culture throughout history. 

Art not only carries an emotional message to the 
viewer, but it is a vehicle for the emotional 
expression of the artist. 

As such, the work of skilled artists who have 
experienced brain damage often attests to the 
creative, adaptive process that lies at the heart of 
human perception, action, and expression. They 
demonstrate the capacity of the brain to transcend 
limitation and to transform loss or change into 
valuable and moving visual expression. Though 
we might observe a loss of skill or a change of 
style in many of these paintings, we cannot help 
but recognize an enhanced or altered vision, one 
that reveals new territory after familiar paths have 

Loring Hughes is a young woman who, like Lovis 
Corinth, was also a painter who suffered damage 
to the right side of her brain. At age 28, in 1985, 
she experienced a series of strokes and a cerebral 
hemorrhage that affected as much as one-third of 
her right hemisphere. Afterwards, she neglected 
the left side of space, the left side of her body was 
paralyzed, and spatial relationships became hard 
to grasp. A small part of her left hemisphere was 
affected, too, enough to cause her some difficulty 
carrying out skilled motor movements with her 
right hand. Despairing of her career as an artist, 
she was convinced she would never paint again. 

Loring was lucky. Despite her own fears and 

against the opinions of her doctors, her husband 

-fc t encouraged her to 

put paint to paper 

y again. Although it 

V was over six 

months before she 

£ ^ could bring herself 

to try, when she 

did she discovered 

a new spontaneity, 

a new freedom to 

create. Along with 

it came a new 


Whereas before 

her injury she had 

g been considered 

mediocre by her 

peers, her work 

_ now drew interest 

Self Portrait, 1981, Loring Hughes and applause 

From whence came this new style and expression? 
Among other things, Loring's injuries forced her 
to plumb the depth of her emotions and share 
them, in simple, bold, and forceful lines. 

Loring had several major obstacles facing her. A 
right-handed person, she had to cope with 
difficulties in planning and carrying out the 
complex motor movements involved in drawing. 
With an image in mind that she wanted to 
produce, she sometimes found herself doing 
exactly the opposite of what she had intended; 
drawing a convex instead of a concave line, for 
instance. She had to learn to cope with the 
frustration and to have patience with herself. 
Although she still has trouble, sometimes, in 
carrying out the movement she intended, she has 
learned to accept the mistake and to erase and 
begin again. She starts with pencil, now, until she 
has the image down. She has also had to change 
the media she works with; she stopped using oils 
since her motor handicaps made it difficult to 

clean up and feel comfortable using highly 
flammable substances like turpentine. She has also 
had to forego using woodcuts, a technique that 
requires great motor dexterity and the coordinated 
use of both hands. 

She has also had to learn to cope with her 
tendency to neglect the left half of space. To 
counteract that problem, she forces herself, 
consciously, to begin at the extreme left of the 
canvas. Although it has gradually become more 
automatic, she still has to remind herself to think 
about it. 

Perhaps one of the greatest challenges had to do 
with her spatial difficulties. When Loring began 

again to paint, she 
found that she 
simply could not 
appreciate the 
between the lines 
she was 

producing. At first, 
she was not even 
aware of the 
degree to which 
the lines and 
shapes they 
represented were 
Gradually, she 
came to sense that 
something was 
wrong, but still 
needed someone 
to point it out to her. At first, she struggled 
mightily to make her images look "real," like the 
things they were meant to represent, a style that 
had previously been her trademark. Now, 
however, she found she could not get the 
perspective right, and the products of her efforts 
appeared to her imperfect and lacking. For over 
two years, she fought to accept the fact that the 
work she was producing would not be the same as 
it was before, and to learn not to compare. Over 
time, she came to be grateful simply that she could 
draw, and she learned to stop asking whether it 
was "correct" or not. She became less judgmental 
and less self-critical. Now, her work often 
surprises her, and sometimes she finds herself 
dismayed — but as she has come to see the images 
as an expression of her inner reality, she grows 
more and more to like them. 

In fact, her work has come to remind her of a style 
of creative expression that she once admired but 
never believed she could achieve. The art of the 

Self Portrait, 1987, Loring Hughes 


Heads of State and Assassin, Gouache, pen and ink, 
1988, Loring Hughes 

German expressionists, the pictures of mentally 
retarded people, and the lines in cave paintings 
had always seemed so free and expressive — but 
Loring had been a strict realist. Looking back, she 
perceives herself as rigid and restrictive in her 
emotional expression, preferring not to share her 
feelings at all. After the damage to her brain, 
however, two things contributed to a newfound 
freedom from inhibition. First, her difficulties with 
spatial relationships made it impossible for her to 
replicate the world on paper, and this forced her 
to accept and explore the world of her own 
emotions. As she describes it, she gave up trying 
to reproduce things and turned, instead, to her 
imagination. Secondly, her brush with death gave 
her the impetus to come out of her shell; "like 
truth knocking on the door," she felt she had to 
expose herself. 

Two years ago, Loring was too ashamed to show 
her work. A year ago, she found herself getting 
comfortable with her new style. To her surprise, 
when she did start showing, the feedback from the 
artistic community was much more encouraging 
than before. Her paintings "deliver an emotional 
wallop" according to art critic Eileen Watkins. 

What can Loring's story tell us about art, about 
creativity, and about the brain? Many aspects of 
human function are involved in the creation of a 
work of art. Each canvas reveals a perception, 
communicates an emotion, and reflects a certain 
degree of motoric skill and technical mastery. The 
brain is the fundamental substrate of all these 
functions, the source from which they all emerge. 
Each individual vision is unique, because the brain 
is not a photographic plate. Sensory information is 
interpreted and the perceptual world is 
constructed by an active, creative process that 
takes place in the brain and is expressed through 
the hand and eye. 

Thus, it may be possible to lose certain cognitive 

or motor functions that contribute to drawing, 
without losing the emotional intensity and 
integrity of artistic expression. This phenomenon 
may help to explain why, when a group of 
neuropsychologists, neurologists, and art critics 
gathered together to choose art work for an exhibit 
accompanying a symposium in Chicago called 
"Art and the Brain," we differed so wildly in our 
assessments of the works. The neurologist and 
neuropsychologists, and indeed the artist himself 
or herself, in many cases, bemoaned the 
deterioration in technical skill after brain trauma, 
and pointed to the loss of spatial relationships or 
precision in motoric execution. In contrast, the art 
critics and art therapists were struck by the 
moving quality of many of the post-traumatic 
works, and pointed to the emotional impact that 
makes a work of art truly meaningful. 

Thus, there is a complex interaction of factors that 
are involved in the generation of a work of art. 
The artist's cognitive skills may influence the way 
she conceptualizes the spatial representation of the 
subject matter; the way this representation is 
depicted will in turn be influenced by the artist's 
motor skills. Yet the final testimony to creativity is 
the extent to which the artist's vision inspires an 
emotional and aesthetic response in the viewer — a 
skill that is fettered, ultimately, only by the 

Dr. Heller is on the faculty of the University of Illinois - 
Urbana and conducts an independent practice in clinical 



Margaret C. Pfrommer 

For many years there has been a consensus among 
persons with disabilities and those who serve their 
needs that independence and employability are 
not only important human aims but sound 
economic goals. It is generally recognized that the 
good use of technical products and services have 
enabled them to earn their own livings and /or 
reduce assistance. Now with the passage of the 
Technology-Related Assistance Act for Individuals 
with Disabilities (P.L. 100-407) come two very 
important public acknowledgements. First, that 
technical aids and services are a vital force in 
maximizing the potential of persons with 
disabilities, and second, that persons with 
disabilities can and do make contributions to our 

Consumers who 
have had good 
experiences using 
products and 
services have 
developed a 
commitment to 

that goes far 
beyond that of 
the typical 
professional nine- 
to-five attitude. 
Such a 

commitment has 
come from the 
Committee on 
Computers and the Handicapped (COPH-2). This 
organization was founded in 1981 by persons with 
disabilities to assist others with severe 
impairments in accessing personal computers and 
to educate them as to the advantages of using 
computers to improve their opportunities in 
education, employment, and independent living. 
This was the basis of establishing the Technical 
Aids and Assistance for the Disabled (TAAD) 
Center. The TAAD Center provides services and 
advocacy with an emphasis and perspective in the 
selection and application of microcomputers that 
is an alternative to the conventional approach of 

the rehabilitation network. This alternative 
approach is somewhat revolutionary in that the 
end users are the ones to make informed decisions 
as to which systems or devices best meet their 

This element of control is important because many 
persons who were seeking to use personal 
computers and other technologies in the past were 
sadly disappointed to find that the severity of 
their disability locked them out of receiving 
service. This came about because of a 
rehabilitation practice called "defined goals" in 
evaluating the appropriateness of a technology. 
Limitations were being set under the guise of 
being realistic. There are many situations in which 
goals cannot be set before consumers get a chance 
to try possible solutions to their problems. 

The heavy administrative structure which 
pervades our society has traditionally de- 
emphasized grassroots involvement, which in turn 
has resulted in persons with disabilities being 
poorly served by unqualified, inexperienced 
personnel. A 1982 OTA (Office of Technology 
Assessment) report stated that those who have the 
authority to prescribe technology may not be the 
best persons to do so, yet they are the ones whose 
values and goals are respected in arriving at 
appropriate applications. This as well as other 
constraints identified as obstacles to persons 
receiving appropriate technology, are often treated 
as inviolable in arriving at the final choice of 
technical equipment. 

The TAAD Center promotes the role of consumers 
with disabilities as problem-solvers, not as the 
problem. Persons with severe physical, visual, and 
learning disabilities are given opportunities to use 
the latest computer technology to pursue self- 
initiated goals in education, employment, and 
independent living. Once these persons have 
established their own goals, they are not only 
given opportunities for hands-on use of various 
computers, adaptive aids, and software, but are 
also afforded the means for drawing upon the 
experiences of other consumers. 

These "other consumers" are themselves persons 
with disabilities or family members who while 
furthering their goals are gaining valuable 
knowledge and experience in the access of 
computer technology by their volunteer activities. 
These contributions are often discounted by 
grantors as being "contributions in kind," or by 
counselors as "vocationally oriented" work 
experiences, but those who have benefitted from 
their volunteer service are truly grateful. This 
demonstrates the TAAD Center as a true example 
of consumer ownership. To further support and 


encourage persons with disabilities to share their 
experiences and newly gained knowledge with 
others, TAAD will formalize this sharing of 
information process by instituting a "peer teacher" 
training program. Staff and volunteers will guide 
and nurture clients until they are confident and 
knowledgeable enough to assume the in-kind role 
of "peer teacher." 

In keeping with 
the Center's 
policy regarding 
Associate Staff 
(volunteers) time 
is important and 
essential to the 
delivery of TAAD 
services, record 
keeping is in 
progress which 
will demonstrate 
the number of 
unpaid hours of 
service that is a 
contribution in 
kind and truly 
makes the TAAD 
Center a 
consumer-run environment. 

The TAAD Center will be involved in a new and 
exciting Illinois Institute of Technology (IIT) 
model undergraduate program to train 
educationally disadvantaged persons with 
disabilities for science careers as rehabilitation 
technologists. The Center's role will be to act as a 
field training site taking advantage of its existing 
service delivery model. The undergraduate 
program from the perspective of IIT addresses all 
of the elements needed to insure successful 
outcomes including an environment (TAAD 
Center) for hands on experiences. 

Because of the severity of their disabilities clients 
often require many hours of individual attention 
and consultation to access the widely scattered 
information about personal computer technology. 
However, due to the unfortunate information gaps 
about computers and other technologies that exist 
in our society, consumers and rehabilitation/ 
vocational practitioners alike have need for 
sources of information that are easy to access. It is 
apparent that the practitioners have neither the 
time nor the inclination to contact many different 
sources and want to plug into one source, press a 
button, and have the answers fall into their laps. 
Although consumers share the need for a 
convenient information source on technology, 
their reasons for needing easy access are different 

from those of the practitioners. The very nature of 
their disabilities makes it a hardship, if not an 
impossibility to conduct the required searches. 
Although central data banks are to a degree 
helpful, they are far from the total solution for 
consumers because the information in such a bank 
is apt to be limited, and the data bank concept 
usually omits the knowledgeable person, not a 
manufacture/distributor, who can explain subtle 
differences. The TAAD Center, as a charter 
member of the Alliance for Technical Access 
(ATA) networks with approximately 40 other 
centers to share resources and information, and to 
problem-solve on behalf of their clients. 

TAAD Center staff attend such national 
conferences as "Closing The Gap," held each fall 
in Minneapolis, Minnesota, to bring back the latest 
computer software and hardware adaptations. 

In addition, other support services need to be 
obtained in order to help clients achieve success. 
Services which require advocacy to assist with 
transportation, referrals to other appropriate 
agencies for assistance, as well as vocational goals 
and the acquisition of computer equipment. For 
instance, as part of a self-established goal, a person 
may plan a demonstration for their vocational 
counselor by locating, through a process of 
investigation, an appropriate adapted computer 
system and then develop their skills in using that 
system. This demonstration may prove that these 
newly found skills may now make them ready for 
job training, a job, or as a potential competitive 

The many other services offered by the TAAD 
Center include technical problem-solving, 
workshops and product demonstrations, and 
operates a small loan program. The TAAD Center 
makes loans of computers, both Apple and MS 
DOS-based, as well as peripherals, adaptive aids, 
software, and library materials. Loans of this 
equipment have been made to both individuals 
and professionals serving persons with 

In the early days of the TAAD Center it was 
thought that most loans could be short-term two 
days to two weeks; however, experience has 
proved that it is difficult to loan equipment for 
short periods of time. Both individuals with 
disabilities and professionals serving their needs 
borrow the equipment because they cannot afford 
the cost, or cannot acquire formal methods of 
financing. Therefore taking the equipment back in 
a week or two does not help persons with severe 
impairments become proficient in its use and thus 
they are not in a position to interest third party 


payers in their situation. In the case of the 
professionals, such as special education teachers 
and therapists, they usually serve an entire 
institution of people or an entire school district of 
children. When these persons have the use of 
adaptive aids or other equipment, they need to try 
them out with more than one person. These 
tryouts are of a trial and error nature thus 
requiring long periods of time. 

A situation which illustrated the need for more 
long-term loans occurred when a special 
education teacher requested the loan of an 
expanded keyboard for an Apple He computer. 
She thought this adaptive aid might benefit one of 
her students, but took the opportunity to try out 
the device with several other students as well. The 
teacher hoped that her school might purchase 
such equipment if the loan proved to be valuable. 
The experience was positive and moved the school 
district to purchase the aid for their own day- to- 
day use with students. 

A man with the responsibility of a grant funded 
project wanted to borrow a computer system 
because his broke down. The repair costs on his 
own computer were not affordable at the time so 
the need for a replacement was imperative to keep 
his project going. 

There are many other situations whereby persons 
with disabilities have benefitted from TAAD 
Center loans of equipment, as well as from the 
other services offered on a daily basis free of 

Persons with disabilities uniquely encompass all 
minority populations and occupy the lowest social 
and economic status in our nation. COPH-2 is 
acutely aware of the desperate need for this group 
to improve their situation and strongly believe 
that adaptive computer technology can help them 
develop their computer skills and that computer 
technology can be one of the instruments of 
change to help persons with disabilities improve 
their opportunities in education, employment, and 
independent living. 

Margaret Pfrommer is a consultant to Northwestern 
University School of Medicine. She is quadriplegic, with no 
use of her hands or legs, and an expert on adaptive 
technology, which enabled her to write this article. 

Even though the TAAD Center's pool of 
equipment, peripherals, adaptive aids, and library 
materials is small, those who have borrowed them 
have benefitted in very different ways. 

A young woman who is a DORS' client had the 
promise that a computer system was on order but 
it would take several months before delivery 
could be made. Her classes had already been in 
session for a couple of weeks, and she became 
fearful of lagging behind in her course work. The 
TAAD Center loaned her the necessary equipment 
until her own computer system was delivered. 

A teacher in a Chicago public high school for 
students with disabilities borrowed a modem to 
use with six individuals. Nine months ago when 
he introduced the modem, none of them knew 
what it was or what it did. Now they all use 
bulletin boards and one student collected over 400 
numbers of bulletin boards nationwide with the 
intention of starting his own. 



Gloria Hess Schreiber 

Ginger Lane remembers world-famous violinist 
Itzhak Perlman addressing a group of students. 
He was describing how his early reviews all began 
the same way — "Slowly, wearing his shiny silver 
braces, Mr. Perlman made his way on stage. He 
laboriously eased himself into his chair, put down 
his crutches, and was handed his violin by the 
conductor." He explained that he was lucky if 
anyone mentioned his playing, and that it wasn't 
until the critics got used to seeing the way he 
walked that they started to pay attention to what 
he had to say musically. 

"You must separate ability from disability," he 
said. "It is the ability that I present to the public." 

Mr. Perlman's response challenged Ginger to look 
at herself not for what she no longer has, but for 
what she has to offer. A dancer and choreographer 
for over twenty years, Ginger suddenly and 
permanently became a wheelchair user six years 
ago when she lost her lower and partial upper- 
body mobility as a result of breaking her neck in a 
skiing accident. 

"I was a very good skier and I was on an easy 
slope," recalled Ginger. "It was early in the 
morning and it was icy. I just wasn't paying 
attention. I lost control, went off the run, and hit a 

Yet, only eleven months later, Ginger was back on 
that same mountain, skiing with a sled. "I asked 
the ski patrol if we could go down the same run, 
and they said, 'No, we don't think so. Why do you 
want to go down it?' and I said, 'Because I want to 
go whizzing past that tree and say #@$!#@ you 
tree, I'm still here'!" 

Ginger admits, though, that it's not the same, 
mostly because now she must function within new 
limitations. "I take what is here today and if I have 
frustrations, it's about the fact that I can't do what 
I need to do with the sled or the wheelchair... I 
don't go down the mountain on my sled and look 
at other skiers and say, 'Oh, God, I wish I had my 
leg and could ski the way they're skiing,' What I 
say is 'Oh, God, I wish I could turn this sled better 
and get down the mountain the way I want to get 
down it.' I want to do the best with what I have, 
which is what I wanted to do when I was 

It was about a year after her injury that Ginger 
also resumed her activity in theater. She realized 



Ginger Lane 

that although she could no longer dance, she 
could still choreograph a show — again, working 
within a new set of limitations. 

"As a dancer/choreographer my body spoke to 
me. Intrinsic to my teaching and dances was 
demonstrating the look, feel, line that I wanted, 
using my own body to show my ideas. Now I 
must rely not on body language, but words. I must 
give words to the pictures in my head and to the 
spiritual or emotional tone I want to evoke. To 
touch and create through words alone is hard for 
me. It's much easier to show the line of the arm 
than to say, 'Arm extended to the side, palm 
down, elbow up, curved wrist, not angular.'" 

Ginger, however, has dealt with this difficulty by 
using assistants who can physically experiment 
with her ideas so that she can see if something 
looks as good in reality as it does in her 
imagination, if there is enough time to execute the 
movements, or if the movements simply aren't 
physically able to work. 

"It's like using a puppet or a mannequin to 
experiment with," said Ginger. "You can count 1, 
2, 3, 4 and have six moves in your head to those 
four beats, but you really don't know if they'll 
work until you try them." 

Ginger has found that her best assistants are 
inherently good dancers. She remembers her first 
assistant after the injury, "She would try the 

movements and say, 'I can't put my left foot here, 
thafs not going to work' or It's easy, no 
problem.'" But what made that particular assistant 
so valuable to Ginger was that if one of her visions 
was too awkward to physically perform, her 
assistant could manipulate it so that it would 

But not all of Ginger's experiences have worked 
out so well. A couple of years later, she was going 
through a period of self-doubt and was 
questioning her abilities. "I felt hampered not only 
by the fact that I didn't have an assistant who 
could demonstrate and communicate what I 
wanted, but I was really doubting myself," 
remembered Ginger. "I was going through some 
personal problems and felt I was losing control of 
my life. There were a lot of outside factors that 
didn't make this frustrating job any easier. Had I 
been in control, I would' ve gone to the producer 
and said, Took, this isn't working.' ...It was a 
demoralizing experience for me and I didn't do 
another show for a year." 

With all that behind her now, Ginger is currently 
working on a show as an assistant director and 
continues to remain involved in theater for three 
hours a night, three nights a week, for eight weeks 
at a time. However, she contends that the theater 
is not a major part of her life at this point. 

"I'm spending a lot of my time in an area that has 
become increasingly important to me, which is 
disability rights and issues of living in this world 
for people with disabilities." As the Director of the 
Disability Awareness Peer Counseling Center at 
Access Living, an independent living center in 
Chicago, Ginger manages what she calls, "major 
life issues rather than creative /enrichment issues." 

She is even considering going back to school for a 
master's in social work. 

"I don't consider my life as one of merely survival, 
I consider it a life of quality. I'm living the kind of 
life I want to live because, basically, I'm doing 
what I want to do." 

Gloria Hess Schreiber is a freelance communications 
consultant, a student at Northwestern University, and serves 
on the Board of Chicago Women in Publishing. 





It was a dream. I was down in the basement of a 
church with a group of women. An old wooden 
pail filled with water sat amongst us, the wood 
gray. Floating on top of the water were butterflies 
and moths. They were dead. The other women 
were frightened and disgusted by the sight of 
them. They wanted to tip the water out and get rid 
of them. I saw the deep blue of the water and the 
brilliant orange of the Monarchs and the subtle 
colors of the moths. I put my hands, one on each 
side of the pail of water, and looked deeply into it. 
I could see the intricate webbing of the wings, 
something that in real life I had never seen, and I 
thought how beautiful they are. I believe that for 
most people the butterfly represents the transition 
from the caterpillar of childhood to the 
transformation into the beautiful, free adult we 
want to be. For me I see the beauty of an even 
deeper transformation - that of death, the death of 
my vision. A part of me is like the other women, 
frightened and disgusted by the thought of 
blindness, but the strongest part of me sees the 
beauty in that death and knows where there is 
death there is new life. 

After the Baptism, scratch board, Arlene Innmon, 1989 

Trapped In My Own Eye, clay sculpture, 
Arlene Innmon, 1988 

Doorway Into Green Birth, oil pastel, Arlene Innmon, 





I grew up in Minneapolis, Minnesota. I was 
always interested in art. Some of that was because 
I couldn't see the blackboard in school so I spent a 
lot of time drawing my hand or the back of the kid 
in front of me. My family encouraged my art, but 
what they wanted was pretty landscapes and still 
lifes. I learned rather quickly how to make them 
look like a photograph, but it wasn't satisfying. I 
graduated from the University of Minnesota in the 
early seventies, majoring in Occupational 
Therapy. For the next ten years or so I was busy 
raising children and working. I did art on rare 
occasions, drawing on subjects around me, but I 
still painted how I thought things should look. In 
1984 a friend encouraged me to send in an 
application for an exhibit called "Art of the Eye." I 
was accepted and received the encouragement 
and confidence I needed to paint the way I 
actually saw. In the spring of 1986 I had eye 
surgery in which I lost a lot of vision and became 
legally blind. For a year it was too frustrating to 
do art and I was waiting for the vision to clear 
which I was told could happen. A year later I had 

more surgery and lost all the vision in one eye and 
lost more vision from the remaining eye. At that 
time I quit working as an Occupational Therapist 
and realized if I wanted to do my art I would have 
to do it now. Since that time, aside from eight 
months of rehabilitation and raising my two 
children, I have devoted my time with a passion to 
my art. My vision continues to decrease so the 
subjects I use, the techniques I use and the 
materials are constantly changing and being 
adapted. My art has become more flowing, 
spontaneous and an expression of my heart, as I 
am unable now to get caught up in small details. 
Much of my work expresses the different way I 
see things but as I lose more vision, the outside 
reality becomes less interesting. Now I do more 
work from dreams and inner visions. My dreams 
are often very powerful stories. I do lecture slide 
shows in which I show the dream image and tell 
the story. My future plans are to have a show with 
the art piece and an audio tape to go with it. I am 
exploring other avenues of creative expression 
such as writing, movement and acting. 


Thawing Out the Heart of God, pastel, Arlene Innmon, 1990 

A Dream - My Father Became the Church, 
mixed media, Arlene Innmon, 1988 



Holly Hudnut Halliday 

We dance around in a ring and suppose 
But the Secret sits in the middle and knows. 

Robert Frost 

She's alone and she's angry. Not to mention 

She'd always had only one goal: When she grew 
up, she was going to fall in love, get married, 
become a mother, raise children, and have a 
happy family. 

But reality tempered Susan Holtz's* dream world 
when her husband died of AIDS heterosexually 
transmitted. He was not a drug user; he did not 
receive tainted blood in a transfusion; he was not 
homosexual. He did, however, have some illicit 
liaisons during their marriage, one of which may 
have left him with AIDS and left his wife a 
widowed mother of three children. In addition, he 
left Susan HIV-positive. Fortunately, their infant 
daughter and the other two children tested 

This is her story as she told it to me over time. She 
was frank and candid about her fears, her hopes, 
her sadnesses. She is a 35-year-old woman whose 
children have always been the center of her life, 
who stopped working when the first was born. 
She has long been concerned with proper diet, and 
she and her family had been seeing a holistic 
health specialist long before it was in vogue, 
avoiding doctors and prescription drugs 
whenever possible. 

Susan does not have AIDS, but she is HIV-positive 
- infected with the virus. She needs to tell her 
young children (now ages 9, 7, and 5) that she has 
a life-threatening disease, but she has not done so 
yet, and her husband died over two years ago. 
She wishes she could tell the world, but she has 
not, for first she must tell her children. 

Why doesn't she tell them? Why doesn't she tell 
more of her friends than just a select few? Why is 
she forced to live a lie, a covert life? Will she be 
taken from these three before they grow up, before 
a cure is found for AIDS? When will the virus 
change to the disease? Such questions parade 
through her head. 

Susan wants to prepare her children for what 
might happen to her, but she hesitates - not 

Ballet Slippers with Pearls and Tickets, Lynn Dee, 1990 

wanting to frighten them unnecessarily. She 
knows she represents safety and she doesn't want 
to plant the seeds of fear that they will lose her, 
since each of them has separately voiced just such 
"what if . . .?" thoughts to her. She does not fear 
so much her own death as she does leaving her 
children to grow up without either parent. 

She treasures the times they have together, for the 
children bring her joy. She grieves at the thought 
of not being able to see them grow up, and she 
fights letting such thoughts cripple her or interfere 
with her mothering. She thinks of Elizabeth 
Glaser, tireless crusader on behalf of pediatric 
AIDS research, and author of In the Absence of 
Angels, who has been HIV-positive for nine-and-a- 
half years and whose health is still excellent. 
Susan vacillates between hope for such longevity 
and fear that it is not to be. 

The family's reality changed drastically in May of 
1987. John had been feeling sick with colds that 
never went away, recurrent fevers and bouts with 
flu. He had read somewhere about a collapse of 
the immune system associated with AIDS and he 
half-heartedly went for a blood test. Even though 
he had herpes, which doesn't kill, and even 
though he had genital blisters that were 
contagious, he assured himself that he wasn't a 
high-risk candidate for the disease since he didn't 
take drugs, was heterosexual, and had never had a 
blood transfusion. He really thought allergies and 
stress at work (he was an independent financial 
analyst) caused him to be run down and 
susceptible to illness, and that if he made dietary 
changes, all would be well. 

It took two months before testing confirmed that 
he was HIV-positive. Susan immediately thought 
of the rest of the family, so they were all tested. 
When she turned out to be HIV-positive as well, 
fear set in. 


Do not go gentle into that good night. 
Rage, rage against the dying of the light. 

Dylan Thomas 

John died at home. She took care of their secret for 
three years, nursing him through his illness. They 
all watched him fight the disease, lose strength, 
and then slip away in the spring of 1989. He was 
41 years old. 

Because of their secret, John was denied a proper 
exit from this world — not enough farewell visits, 
not enough time for grieving, and because of this, 
he died ashamed and angry. Because of their 
secret, Susan was denied a bereavement group 
after his death. She shifted from her total two- 
year immersion in helping him to sudden and 
complete isolation from other adults. This was by 
choice, she hastens to add. 

A recent study has shown that support groups 
strengthen many cancer victims. Psychological 
support not only helps in dealing with the 
emotional distress of the illness but may also 
strengthen immune systems. And this is good 
news for AIDS patients and those who, like Susan, 
are HIV-positive. From this healing web of 
caregivers — including family members and the 
friends who share the secret — Susan now gains 
great emotional sustenance. With their help and 
their active listening, Susan regains control over 
this world of uncertainty in which she lives: when 
she starts to lose it, she knows who to call. 

Susan has recently been attending a church that is 
helping her. Its philosophy of encouragement is 
uplifting. Sin is not talked about there; members 
love themselves and others. They forgive one 
another and learn to forgive themselves. The 
emphasis is on how to improve their lives, and she 
has seen progress in her own life, and that feels 
good. She doesn't want to become stuck in anger 
or fear, as she saw John become. As Elizabeth 
Glaser has written: 'There is no map for life; 
unfair things happen. The challenge is what you 
do with these things." 

Susan's and John's life together had initially been 
all that a romance should be: great magnetic pull, 
lots of passion. They were together for seven 
years before they married. In the seventh year, 
Susan found out that John had not been faithful, 
but he convinced her of his contrition and very 
soon thereafter they got married. She thought she 
could deal with his infidelity, but a large part of 
her could never trust him totally. 

He was a wonderful dad — very loving, nurturing, 
and caring. He was with the kids a great deal. 
She and John enjoyed being parents together, but 

they had trouble being husband and wife. They 
didn't communicate well and they even talked 
occasionally about separation. As angry as Susan 
was, she wanted to stay together for the children, 
hoping that maybe the illness would at last bring 
them together in their marriage. 

Susan now sits in the rocker with the winter sun 
streaming in upon her, and she contemplates her 
life. The invisibility of her condition makes it 
hard. She looks fine, she feels fine. No one would 
guess anything's wrong with her. But she 
wonders at her every symptom: Is a lingering cold 
a first clue? Is her fatigue simply normal 
exhaustion or a sign that the illness is moving in 
on her? She is asymptomatic, but how long will 
that last? 

Reports from the medical field are encouraging. 
In the January 15, 1991 papers she read that an 
AIDS vaccine has proven safe for humans; the 
vaccine seemed to prompt a double immune 
response in the volunteers, for not only did they 
develop antibodies to the AIDS virus, but they 
also produced immune system "killer T-cells" 
(those are the cells of the immune system that are 
the primary defense against viral infections) 
specific to the AIDS virus. And a few weeks later 
she read of joint research between Baxter 
Healthcare Corporation and Argonne National 
Laboratory aimed at killing the AIDS virus. This 
is the first time a national laboratory has entered 
into research with a private, for-profit firm under 
a new federal law designed to encourage just such 
cooperation. There may be hope. 

With her eyes closed there in the rocker, her 
thoughts drift toward death. But the background 
music of Susan and John's favorite song, "Don't 
Give Up," drifts across the room sending her a 
different message. She must focus on the gift of 
having time to prepare for leaving. She can 
decide, based on conversations she had with John, 
where their children will live after she dies. She 
can write letters for the children to read — much as 
she read letters that her father had left for her, for 
he died when she was two years old. She can 
make videotapes for the children to see later. She 
can keep taking photographs and getting family 
albums together. 

Susan can keep living into the moment, reveling in 
it and in her time with the children. She wants 
resolution, but there is none. She must take care 
of herself as she did each time she was pregnant. 
At that time she had learned to wait, but there was 
activity in her passivity. The receptivity of that 
passivity is what she wants to recapture now. 

Susan was reading The Wizard of Oz to five-year- 


old Anne the other day. She thought how like the 
Cowardly Lion she was: She really didn't know 
her own strength until she was tested. But she has 
proven herself strong. She has lived through her 
husband's illness and death. The children are 
happy. She is responding to AZT. 

Franklin Roosevelt had it right when he said the 
only thing to fear was fear itself. Susan knows 
that fear will be her greatest debilitator. She must 
stay strong for herself and for the children. She 
must find pockets of quietude to renew her energy 
in order to be there for them. 

Susan can only hope for a new understanding 
about PWAs (People With AIDS). AIDS victims 
are contagious only when fluids are exchanged — 
and that does not occur in friendship, over a cup 
of tea, or when our children play with Susan's. 
AIDS cannot be spread by touching, or hugging, 
or kissing, or from a tear, or from any form of 
bodily contact other than sexual intimacy. Nor 
can it be spread by sharing towels, food, or eating 
utensils with PWAs. 

The hidden costs of the disease are many. Lost 
friends. Lost family members. Lost jobs. Lost 
insurance coverage. A lack of knowledge and the 
fear of contagion from casual contact. It was 
John's awareness of society's potential cruelty, 
based on ignorance, that kept him from being 

Keeping the secret leads to emotional 
schizophrenia: Susan is one thing to her 
children — strong, confident, loving — and another 
to her inner self — alone, grieving, fearful. 

Toward the end of John's life, he told his story to a 
reporter from the local newspaper. Susan was 
glad that he did this before he died, because it 
offered a catharsis for him, a kind of closure. After 
that he seemed relieved and more relaxed. 

Yet the reporter who told John's story entitled it 
"Family on Death Row," a title that catches the 
essence of society's misconception about AIDS, 
since death row is reserved for the most hardened 
of criminals, for those who have committed the 
most heinous of crimes. To use that metaphor is 
to imply these connections. An article with this 
sensationalist title perpetuates the myth that all 
AIDS sufferers are wrongdoers, that they need to 
be punished. It reinforces the negative attributes 
that society has already placed upon those with 
this illness. 

No, if AIDS is the first epidemic, AFRAIDS is the 
second. AIDS victims and HrV-positive sufferers 
are forced to live a lie. 

Susan has a friend who calls her "The Dancer," for 
she loves to dance. Barn, jazz, ballet, ballroom, 
folk — you name it, she loves it. She and the kids 
frequently just turn the music up and dance away. 
When John was dying, she found release in her 
once-a-week dance class. She would throw herself 
around in rhythmical movement, work out her 
pent-up emotions, and become filled with joy. 
And because she knows how to dance alone, she 
doesn't need a partner. She wants to flow and 
glide through this period with the grace and the 
joy of the dance, and she knows that if she is 
fearful about the next step, she'll be sure to miss it. 
"You do what you have to do. This is not a hero 
thing," she says. She wishes she had someone 
loving her, but she can dance on her own — a 
metaphor for her life. 

The greater the love, the more false to its 

Not to be born is the best for man; 
After the kiss comes the impulse to throttle, 
Break the embraces, dance while you can. 

W.H. Auden 

Susan has lived with the impulse to throttle and 
has gradually overcome that anger; she has broken 
the embrace and will dance while she can. 

To the reader living with HIV, know what Susan 
has learned; that there are ways to strengthen the 
immune system through proper diet, moderate 
exercise, stress management, positive mental 
attitude as well as through taking AZT regularly 
(or DDI for those who have toxic reactions to 
AZT). And know too that early medical 
intervention puts time on your side. For the 
reader with further questions, call 1-800-HIV- 
INFO, the local department of health, or the 
National AIDS Hotline, toll-free, 1-800-342-2437. 

f not her true name. 

Holly Hudnut Halliday is a writer and editor for the 
University of Chicago Press. She recently completed her 
graduate studies at Northwestern University. 


Barry Birnbaum and Judy Panko Reis 

Josee Andrei is blind. She has been since birth. 
Born in Corsica, raised in Belgium, a psychologist, 
mother of three, poet, hypnotist, ceramist, comedi- 
enne, and painter, no one captures the essence of a 
renaissance woman better than she. 

In 1985, a female artist who taught blind persons 
to paint was told about Josee Andrei, who was 
described as a blind woman who coordinated her 
wardrobe colors splendidly. Sensing this talent 
could lend itself to painting, the teacher brought 
the subject up to Josee. Her response, as always, 
was, "I'll try about anything." 

From that beginning, it's amazing to see how tight 
her compositions, structures, and forms are given 
they are products of a self -created technique, and 
invented by a woman who has never visually 
experienced color. 

Expanding enormously on the processes taught to 
her by her instructor, Andrei gradually developed 
her own method of painting. 

Working on canvases ranging in size from 36 x 48 
to 48 x 60, a colorful acrylic base is painted on the 
canvas. Then she "draws" with masking tape. 
Each shape to be painted (i.e. a house, stairs, a 
person) is basically outlined with various widths 
and lengths of masking tape. Using its raised edge 
as a tactile guide, she glides from image to image. 
Eventually everything will be laid out on the 
canvas as masked edges. Then comes the joy of 

Tubes of acrylic paint are labeled in braille, help- 
ing her to differentiate those colors she has 
learned to be warm and cool. Andrei's deft touch 
and her self-proclaimed ability to tap into the 
collective pool of artistic knowledge must have 
passed on to her through the genetic memory of 
her Mediterranean origins and given birth to her 
rainbow palette. Sponges, brushes, fingers all 
come into play as tools. She has the option of 
painting between the masking taped edges, or 
painting around the edges. Finished works sparkle 
and dazzle, frequently eliciting a common reaction 
from viewers, "It's so beautiful I feel like touching 
your painting." 

Josee Andrei 

These days, as in the past, Andrei finds inspira- 
tions for her paintings in her daily experiences - a 
mood, a fragrance, music, or a walk in the woods 
with friends. 

Working from her two bedroom living space in 
the Haight-Ashbury district of San Francisco, she 
uses her large kitchen as the painting studio, and 
one bedroom as a drafting room. The whole living 
space could be considered an art studio since her 
canvases and, award winning ceramics, and 
sculptures are strewn about everywhere. 

Josee Andrei would like to teach her techniques in 
schools for the blind but in America, she feels that 
such schools regard art as rather insignificant. By 
contrast, she notes that in Europe, where she was 
raised, the teaching of the arts to the disabled is 
welcomed and encouraged. 

Andrei has shown her work in a myriad of shows, 
and has sold. She often supplements her income 
from the arts by relying on her training as a hyp- 
notist, treating clients through self-hypnosis to 
break various personal habits. Professional experi- 
ence as a Gestalt psychologist in Belgium assists 
her in helping clients overcome their problems. 

Complementing these talents are literary accom- 
plishments. Drawing upon her studies at the 
Sorbonne in psychology and modern literature she 
has published poetry, children's stories and film 


Sister of the Night, 
Josee Andrei 

scripts in her native French language. 

In 1988, Andrei expressed yet another facet of her 
ever-evolving character by publishing Hidden 
Waters, her first English-language book of poetry, 
replete with original artwork. Currently she is 
working on publishing her second book of poetry. 

Willing to "try anything," there seem to be few 
barriers Josee Andrei can't handle with imagina- 
tion and finesse. 

Editor's note: Josee Andrei can be contacted by writing Olivia 
Platford, Eye to Eye Communications, 1166 Haight Street #11, 
San Francisco, California 941 1 7. 


Harriet Tubman 
Ludwig Van Beethoven 
Thomas A. Edison 
Francisco Goya 
Sarah Bernhardt 

Franklin D. Roosevelt 
Whoopi Goldberg 
Marlee Matlin 
Woodrow Wilson 
Bruce Jenner 

Write to Disabled Students Services Program, San Jose State University, 
1 Washington Square, San Jose, CA 95192-0168 or call 408/924-6000. 


Good News for 
People of All Ages 
With Disabilities 

Statewide Library Information 
For Caregivers of the Disabled 
(Project SLICD) Is Now 
Available In Every Illinois 
Public Library 

Positive Images: 
Portraits of Women 
With Disabilities 

A Videotape by Julie Harrison 
and Harilyn Rousso 
1989, 58 min., color video 
Captioned: Rental $75 Sale $295 

Designed to provide positive, realistic 
pictures of the lives of women with 
disabilities. Positive images focus on 
three strong and articulate women. 



It's cloudy outside. 

Inside my sky is clear. 

A few tiny cumulus clouds appear 

to the west 
But my spirit is alive and can blow them away- 

I soar as on wings of eagles 

Swoop down, land on limb, fold my wings, 

Snuggle fledglings in my breast. 

My talons are sharp. 
I gaze down from the nest, target a fish. 
Eyes, wing, and talon become one. 
Tree to water to tree in one 

unified motion 
I bring home to the nest that which I desire 

for myself 

for those I love. 

Only the sadness the fish must die 
darkens the cumulus clouds. 

Dave Matteson 





The boy running ahead 


the locust seed, 


it float 


down to earth . 

The woman 
walking behind 
with her cane 
"That is me 
with the pain 
Crashing to earth 
Trying to whirl 
Still in the air 
Fighting gravity, 
Luck and a higher hand 
Choosing where I land," 

The boy 

runs on 

Sending feathery seed 

after feathery seed 

Whirling and crashing 



happy in the 

motion and contest 

with air and pull. 

The woman smiles 
on her unaware 
and ponders 
the oblivious 

joyfully wild 
Ways of destruction. 
Until she sees 
that the boy 
is setting motion 
free again 
Realigning patterns 
of seeding. 

Looking up 

at the canopy 

of overriding trees 

She wonders which 

have been allowed to stay 

where their heart first fell 

And which 

were pulling groaning 


their settled place, 

Reanchored here. 

Plan and pattern 

Random floating 

Aiding air 

Unseen hand 

These parted the air 

around her 

until she found herself 

behind the boy 

at their door 

And knew 

that she, at least, 

was home 

and not crashing 

Through any plane. 

Glenda Bailey-Mershon 




Seeing Voices by Oliver Sacks, 

University of California Press, Berkeley, CA 

Reviewed by Lynn Dee 

Oliver W. Sacks, a well known British neurologist 
and author, likes to take the reader on different 
journeys through his clinical tales. He places the 
human subject — the affected struggling human — 
at the center and deepens the case history into a 
narrative or tale. This makes for very interesting, 
educational reading. Seeing Voices follows Sacks's 
earlier successful publications. He takes the reader 
on an unusual journey through the world of the 
deaf. Sacks did not have any clinical experience 
with the Deaf, but after meeting deaf friends and 
working with specific deaf patients, he began 
learning sign language. His other writings include 
clinical tales covering autism, Tourette's 
Syndrome and epilepsy — to name but a few 
diseases — that were gathered together in his best 
seller, The Man Who Mistook His Wife for a Hat. 
Other Sacks's books include Migraine (a ground 
breaking study of headaches), and Awakenings (an 
extraordinary account of how the newly 
discovered drug, L-Dopa, could temporarily 
restore consciousness to a group of people who 
fell into zombie-like states during the great 
encephalitis epidemic of the 1920's). This latter 
book was called a masterpiece by the poet W. H. 
Auden, and has recently been made into a 
powerful and effective movie. 

Another predecessor to Seeing Voices is Sacks's A 
Leg to Stand On - his firsthand experience as a 
patient. This book describes his accident during a 
walking tour in a Norwegian mountain that 
resulted in a severely fractured leg with ruptured 
main tendon - and the memoir of his near death 
and long convalescence - which led him to create 
his view of "existential neurology" - a neurology 
of self in dissolution and creation. 

Which brings us to Seeing Voices - how Sacks views 
the Deaf as a unique window on "what is 
distinctly human in us - our capacity for language, 
for thought, for communication and culture." It 
seems that when one sense is absent, other senses 
emerge creatively to spark beyond ordinary levels 

Oliver Sachs 

or compensate for the 
absent, dissolved sense. 
This position fits his 
"existential neurology" 
viewpoint. The hearing 
sense or ability 
"dissolves" or ebbs away 
and other potential 
senses "wave" over. For 
example, he contends 
that the deaf develop 
more acute sight 

In the preface of Seeing Voices, Sacks clarifies his 
position as an outsider of the field of the Deaf with 
no axe to grind. He includes numerous, lengthy 
footnotes as "mental or imaginative excursions," 
also written in Sacks's fine flowing and incisive 
style, to be read or skipped, as the reader chooses. 

Part I of this three part book covers the history of 
the Deaf - from ignorance to flickering periods of 
illumination. In 1776, Abbe de l'Eppe wrote a 
proposal for teaching the deaf, using a 
combination of Sign developed by mute tramps 
from the streets of Paris and French grammar. This 
resulted in successfully teaching his deaf students 
to read and write. His novel approach made him 
known as the "Copernicus" of deaf education. 
One of his students, Pierre Desloges, wrote the 
first book ever published by a deaf person in 
which the frightening world of being without a 
language is described. Language helped him 
comprehend abstract ideas and pursue complex 
intellectual subjects. 

De l'Eppe's methods spread throughout Europe 
and America with schools primarily taught by 
deaf teachers. But later Victorian pressures of 
conformity spread into the spheres of the deaf, 
with intolerance of the minority. Further 
complications ensued after Laurent Gere, the last 
great supporter of Sign, passed away in 1870. The 
final clampdown came ten years later when the 
International Congress of Education of the Deaf 
voted to prohibit the use and teaching of Sign in 
schools. From that time, with the prevalence of 
oralism (speech reading and auditor)' training, 
without Signs), the educational achievements of 
the Deaf plummeted. Sacks comments that it took 
two generations of Sign to establish a rich culture/ 
language for the deaf and just that same period of 
time to uproot it. 

Sacks's visit to Martha's Vineyard and its older 
residents, survivors of an earlier community all of 


whom - both deaf and hearing - signed, convinced 
him that sign, the visual world of gestures, is the 
fundamental language of the brain. He is also of 
the opinion that to be born deaf is much more 
serious than to be born blind. He points out that 
the prelingually deaf, unable to hear their parents, 
are at risk of failing to develop language unless 
early and effective measures are taken. 

In the second part of the book, Sacks constructs his 
personal view of deafness based on his extensive 
knowledge of neuropsychology, neurophysiology 
and linguistics. As is well known, for the majority 
of us the left hemisphere of the brain controls 
language while the right hemisphere handles 
visual and spatial duties as well as novel 
experiences. However, in working with deaf 
stroke victims, researchers have learned a startling 
new fact: that Sign is controlled by the left 
hemisphere like any language, even though it is 
visually and spatially oriented. Since humans are 
neurologically ready to acquire language during 
their first three years of life, any delay of language 
acquisition can severely affect their potential for 
symbolic thought, i.e., they apply "chair" only to 
the chair in view, not to the abstract or generic 
idea of chair. They also have difficulty 
understanding questions and carrying on a 
lengthy dialogue. When deaf persons learn to 
Sign, visual skills are developed that help them 
discern subtle facial expressions and spatial 
perceptions. Through hand dexterity, signing also 
gives them a keener sense of movement. The test 
of copying Chinese pseudo-characters was given 
to a group of deaf Chinese children and hearing 
Chinese children ; the former did far better, which 

demonstrated that deaf children have more astute 
visual intelligence than their hearing 
contemporaries. Dr. Sacks maintains that Sign 
Language is fully formalized and is replete with 
grammar. However, Signing has been underrated 
as a means of communication because hand shape, 
movement and spatial positions are poorly 
translated into the written word. 

In the third part of the book we learn about 
Gallaudet University - the only university in the 
United States for deaf students - and the exciting, 
ground breaking events of March 9-14, 1988, when 
the students organized the demonstrations which 
were effective in bringing Gallaudet University its 
first deaf president. 

Seeing Voices is a lovely patchwork quilt of 
interesting facts and speculations on the world of 
the deaf. The extensive footnotes provide 
additional scientific background for the reader 
with more than a casual interest. Sacks's highly 
admired lucid style and his probing and humane 
intellect shine through. 

The world of the deaf is much misunderstood and 
unappreciated. Sacks dispels many of the 
prejudices of the hearing world. In addition, this 
book is an exciting contribution to our 
understanding of the neuropsychology of the deaf, 
especially in regard to laterality (hemisphere 
dominance) in brain function. 

This review has been adapted from a previously published 
review in the newsletter of American Hearing Research 
Foundation, permission for reprint granted. 

Lynn Dee 

From a purely individual human/design view point, Lynn 
Dee approaches her photo or illustrative subjects with a 
special interest in their natural or machine made attributes - 
to give the viewer renewed perception. A major "cross- 
current in the upstream of creativity," to cope with, is her 
congenital profound hearing loss. Lynn's undergraduate 
studies at St. Xavier College included a travel-study program 
in Europe. A Masters of Fine Arts degree from the School of 
the Art Institute of Chicago followed. 

Photo of Lynn Dee shows her with Nora, her hearing-ear cat. 
Her photographs appear on pages 15, 26 and the cover. 




Theresa Rooney 

Albrecht, Gary L. The Sociology Of Physical Disability And Rehabilitation. Pittsburgh, University of Pittsburgh Press. 
Written by behavorial scientists researching the sociology of physical disability and rehabilitation. 

Barrett, Carolann. "A Network For Disabled Women." Woman of Power. Fall, 1990. p. 31. 
Interviews Marsha Saxton, author of With Wings: An Anthology of Literature by and about Women with 

Becker, Elle Friedman. Female sexuality Following Spinal Cord Injury. Bloomington, II., Cheever Publishing, Inc. 1978. 
Discusses the sexual experiences of spinal-cord-injured-females. 

Biscoe, Sandra Duchnak. Functional Capacity Limitations And Disability. Washington D.C., Washington SSA Publica- 
tion, 1972-74. 

Reports on disabilities in the United States using data collected from the 1972 Social Security Administration 


Bloch, Erich A. A Directory Of Federal R&D Agencies' Science And Engineering Programs For Women, Minorities, and 
Physically Handicapped Persons. Washington D.C., National Science Foundation. 1985. 

Provides information about programs designed to attract women, minorities, and the physically handicapped into 

science and engineering careers. 

Bo we, Frank. Comeback. New York, Harper and Row, 1981. 
Profiles six handicapped people and a therapist. 

Brooks, Nancy A. Women and Disability: The Double Handicap. New Brunswick, New Jersey, Transaction Books, 1985. 
Explores issues concerning women with disabilities who suffer the double effect of sex discriminarion 
and physical handicap. 

Campling, Jo. Better Lives For Disabled Women. Great Britain. Virago Limited. 1979. 
Written with the disabled woman, living at home, in mind, this book covers many problems faced in daily living. 

Cheever, Raymond C. Bowel Management Programs. Bloomington, II., Accent Special Publications, 1975. 
Gives ideas and techniques for bowel management in social situations. 

Cornelius, Debra; Makas, Elaine; and Chipouras, Sophia. Sexuality and Disability. Regional Rehabilitation Research 
Institute on Attitudinal, Legal, and Leisure Barriers. Washington D.C., George Washington University, 1979. 

Includes information about specific disabilities and sex education, programs, functioning, attitudes, counseling, and 


Eckhardt, Elizabeth May; Waggoner, Neva R.; Buettke, Eleanor M.; Schwab, Lois O.; Trotter, Virginia Y. Homemakcr 
Rehabilitation. Washington D.C., Women's Committee. The President's Committee On Employment Of The Handi- 
capped. August, 1972. 
Covers child care, clothing, home management, and homemaking devices for disabled homemakers. 

Eneby, Gunnel. Let There Be Love. Sex and the Handicapped. New York, Taplinger Publishing Company. 1975. 
Explains the need for sex and love for those living in an institution. 

Fine, Michelle and Asch, Adriene. Women with Disabilities. Essays In Psychology, Culture, and Politics. Philadelphia, 
Temple University Press. 1988. 
Takes a look at women's disability rights from a feminist point of view. 

Kendrick, Deborah. "Just Being Mom: I Just Do What All Mothers Do." Chicago Parent. ( West/ South ) Dec. 1990. 
p. 19. 
Tells how blind mom takes care of her family. 

Landis, Carney. Personality and Sexuality Of The Physically Handicapped Woman. New York, Arrow Press. 1980. 
Focused on non-institutionalized women with such physical handicaps as chronic heart disease, spastic 
paralysis, epilepsy, and orthopedic disabilities. 


Loomer, Alice. Famous Flaws. New York, Macmillian Publishers, 1976. 
Talks about famous people who have flaws and physical handicaps. 

Marinelli, Robert P. and Dellorto, Arthur, E. The Psychological and Social Impact of Physical Disability. New York, 
Springer Publishing Company, 1977. 
Teaches reader about the effects of the rehabilitation process. 

Matthews, Gwyveth Ferguson. Voices From The Shadows. Women with Disabilities Speak Out. Toronto, Women's Educa- 
tional Press. 1983. 
Includes interviews with disabled women and an autobiography of experiences of a disabled woman. 

National Innovations Centre Research Team. Disabled Students In Higher Education. London, National Innovations 
Centre, 1974. 
Deals with Britain's disabled full-time degree seeking and higher degree seeking students at universities. 

Nordquist, Inger. Life Together - The Situation Of The Handicapped. Stockholm, Bromma Swedish Central Committee for 
Rehabilitation, 1975. 

Notes parent-handicapped child relationships, sex education for handicapped pupils, and sexual information for 


O'Toole, Corbett J.; Weeks, Cece. What Happens After School? A Study of Disabled Women And Education. San Francisco, 
U.S.Department Of Health, Education, and Welfare. 1978. 
Outlines research results to be used by disabled female students to help them choose career paths. 

Sacks, Oliver. A Leg To Stand On. New York, Summit Books, 1984. 
Examines how author became temporarily disabled when he broke a leg mountain climbing. 

Savitz, Harriet May. Consider Understanding Disability As A Way Of Life. Plymouth Meeting, Pa., Sister Kenny Institute, 
Discusses employment, daily living, and activities for the physically handicapped. 

Saxton, Marsha. With Wings: An Anthology of Literature By And About Women With Disabilities. New York, Feminist 
Press at The City University of New York. 1987. 
Expresses feelings of disabled women through creative writing. 

Splaver, Sarah. Your Handicap - Don't Let It Handicap You. New York, J. Meisser, 1967. 
Gives young, disabled persons understanding the special difficulties certain handicaps present. 

Stone, Deborah A. The Disabled State. Philadelphia, Temple University Press, 1984. 
Takes the view that disability is a socially created category that determines the legal status of one's 
handicap in relationship to government policy. 

Task Force On Concerns of Physically Disabled Women. Within Reach. New York, Human Sciences Press. 1978. 
Covers implementing sexual and contraceptive guidelines of disabled women. 

Task Force On Concerns of Physically Disabled Women. Towards Intimacy. New York, Human Science Press, 1978. 
Tells feelings of physically disabled women concerning sexuality. 

Wachter, Peter; Lorenc, John; and Lai, Edward. Access Chicago. Chicago, Rehabilitation Institute Of Chicago, 1976. 
Features survey of architectural and construction considerations to help the physically handicapped lead 
more productive lives. 

Walzer, Mary Meister. A Travel Guide For The Disabled: Western Europe. New York, Van Nostrand Reinhold, 1982. 
Designed for the disabled, guide is filled with tips for traveling in Western Europe. 

Washam, Veronica. The One-Hander's Book. New York, John Day Co., 1973. 
Demonstrates acquired techniques for individuals who don't have full use of an arm including social 
occasions, eating, driving, dressing and taking care of baby. 




Stop the War Against Women 


• every day four women are killed by batterers in the US 

• every 6 minutes, a rape is reported in this country; the FBI estimates that 
only one out of ten rapes is actually reported 

• one in four college women is a victim of rape or attempted rape while she 
is in college, most by someone known to the victim 


For more information contact: 

Fellowship of Reconciliation 

Box 271 

Nyack, NY 10960 




Davantage que les hommes el malgre le meme bourrage de crine, la 
meme sous ou mauvaise information, les femmes sont conire la 
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le 26 janvier 1991 


20 ans de sexuality 

Vingt ans apres .'^mergence du 
neo-feminisme, qu'en est-il de la 
problematique sexuelle de I'homme 
et de la femme? 

Lieu: Institut de Sociologie U.L.B. 

Salle Duprgel - 44 avenue Jeanne 
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Renselgnements et Inscription: 

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National Women's History Project 
7738 Bell Road Windsor, CA 95492 
707-838-6000 Fax: 707-838-0478 

For Further Information: 
Contact Mary Ruthsdotter 


After 72 years of ceaseless campaigning, women finally won the right to vote in 1920, on 
August 26. The date is now commemorated as "Women's Equality Day." You can easily, 
and inexpensively, call attention to this monumental accomplishment with displays or 
programs using materials from the National Women's History Project. A spectacular, full- 
color, 17" x 21" poster of Susan B. Anthony, renowned leader of the suffrage movement, 
and a three-color, 18" x 24" poster collage of photographs from the events leading up to the 
August 26 landmark are just two of their display choices. The videos, "How We Got the 
Vote" and "Women in American Life, 1880-1920" are two program choices. These are all 
available through their 48-page, multicultural Women's History Resources catalog. $1, from 
NWHP, 7738 Bell Road, Windsor, CA 95492, or 707/838-6000. 


Hot-pink stickers and imprinted pencils, coloring books and colorful posters, books, games, 
records and other marvelous materials featuring women from U.S. history can go back to 
school with your children this fall. Like the Susan B. Anthony coin, much of women's 
history has been forgotten, left out of most school curricula. As a parent, you can easily 
introduce positive female role models like Anthony, Harriet Tubman or Maria Tallchief to 
your children and their classmates through materials from the National Women's History 
Project. Their 48-page catalog is packed with surprises for your kids and delights for their 
teachers. For a copy, send $1 to NWHP, 7738 Bell Road, Windsor, CA 95492, or call 707/ 


Sandy Mishur, Coordinator, 708/597-2982, 14525 South Pulaski Rd., #22, Midlothian, IL 60445 

Gaia Network is a resource development network for women. It focuses on earth centered groups for 
growth, fun and health. The network offers women creative opportunities and shares information about 
like minded networks. Gaia is a consultant to existing education and treatment programs. It facilitates 
activities with your group and shares resources through lecture and demonstration on your site and/or in 
local natural areas. 

Program cells are custom designed to fit into your plans for treatment and education and thus can help to 
relieve demands on staff and enrich existing services to your clients. All activities rely on a nature based 
value system. 

For further information contact Sandy Mischur at the above address. 




Mother Wove the Morning 

woman play written and performed I 

Carol Lynn 

"Why did I grow up feeling that my world was a Motherless house?" 

Sixteen women throughout history answer that question, a 

paleolithic woman, an Egyptian priestess, a biblical woman 

who watched the rape of the Levite's concubine, 

a Gnostic woman, a medieval witch, a 

Shaker deaconess, and others. Their 

dramatic stories show that the 

human family has always 

longed for its Mother 

in Heaven, has often 

exiled Her, and is 

now inviting Her 

to come home. 


3133 North Halsted, Chicago, Illinois 60657 

(312) 348-4060 

Preview Performances 

June 14th. 15th. 18th. 19th. 20th 

Tickets: $10 

Regular Performances 
Wednesday through Saturday 
Beginning June 21. 1991 

Tickets: $10. $15. $20 

All Performances at 8:00 p.m. 


Take a train, take a plane, 

ride a bus or a bike, 

but go to 'Mother Wove the Morning'... 

a magnificent, emotionally charged performance. 

takes your breath away." 

Men Tribune. AmoM 

"Immensely satisfying and thought provoking... 
skillfully executed " Sni un Tnbjjw, Uuh 

What Carol Lynn Pearson has done is remarkable... an 
enthralling piece." Hi»e Cnm. J 

"Pearson. surely the 17th woman 
in her cast of truth-seekers" 

MfchMt Hirttty, Chicago Tribw 


We welcome your writing. Unsolicited manuscripts are usually reviewed within six months. 
Please submit your work in double-spaced typescript and enclose a SASE. To submit on com- 
puter disc, send a i x h " hard disc, using Word 4.0, compatible with a Mac II and include a printed 
copy. Payment for accepted articles is in copies of the The Creative Woman. 


Fall 1991 Crossing the Mainstream: Lesbian Perspectives (full) 

Winter 1992 Women and War (Deadline November 1, 1991) 

Spring/Summer 1992 The Changing Family (Deadline February 1991) 

Fall 1992 Women in the Year Two Thousand: The Millennium (Deadline May 1992) 

The Creative Woman publishes essays, fiction, poetry and graphic arts. Each issue is developed 
around a specific theme, but may contain material unrelated to the theme. We celebrate the 
creative achievements of women in many fields, from a feminist perspective. 



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An "Open Call" Competition To Publish 
p< The Creative Woman 

C-'VCclti^C Governors State University will fund the magazine 
1 * through December 31, 1992, the date of the retirement 

^A/Oll lcll I of Editor Helen Hughes. To continue the tradition of 

making the invisible visible, displaying the accomplish- 
ments of women in a variety of fields, we offer you the 
opportunity to step into this transition point. This is a free, open, democratic competition, based 
on the vision, ideas, enthusiasm of the applicant, not an "old boys" or "old girls" network setup. 

This offering may be of interest to women's organizations and/or departments of Women's 
Studies or Liberal Arts in institutions of higher learning. Individuals may also apply. 

What You Get: 

A fifteen year old magazine, The Creative Woman, ISSN #0736-4733 

List of 600 current subscribers in alphabetical order 

Mailing labels of current subscribers in zip code order 

Bookstore standing orders (15) 

Records and lists on computer disk, 5V4" IBM compatible 

Hundreds of back issues, going back to 1978, and still in demand 

Archival and correspondence records (two file drawers) 

Planning materials for future issues, to use or not, as you see fit 

The opportunity to publish an established magazine, and to shape her future according to 
your own editorial policies. 

What You Do: 

Send us a letter of application, telling us your ideas, such as themes for special issues. How 

would you like to see The Creative Woman develop or change? 
For further information, including financial spreadsheets and the latest Annual Report, write to: 
The Creative Woman 
Governors State University 
University Park, IL 60466 

A committee of judges will be appointed by the Editor and the Provost of Governors State 
University. The opinion of the judges will be final. The deadline for applications is December 31, 

The date for transfer of ownership and copyright will be December 31, 1992. 






Sharing a paratransit ride with my friend 
Veronica, the subject of pregnancy and gyneco- 
logical visits came up. "I just don't know what to 
do anymore. Bob and I think it's time to get some 
medical advice on our chances to get pregnant, but 
it's so difficult for me to go to the gynecologist 
when Bob is not available to transfer me from my 
wheelchair onto the examining table." 

After giving her disability awareness training 
session on speech disabilities, my colleague Joyce 
confides to me about concerns regarding her lack 
of birth control options. "Most of my friends who 
are single like me, use the pill — but I have a 
swallowing disorder that prevents me from using 
oral contraceptives. I wish someone could find a 
way for me to make the pill adaptable to my 

A few months ago Grace was fuming as she 
shared her mammogram experience with me. 
"Can you believe it? The technician actually 
pressed me to get up out of my wheelchair and 
stand for just one minute!" 

Like my friends, I share concerns about the psy- 
chological and architectural barriers we as dis- 
abled women encounter in our efforts to indepen- 
dently meet our health care needs. 

As a result, we along with others, are joining 
doctors Suzan Rayner and Kristie Kirschner of the 
Rehabilitation Institute of Chicago in designing a 
clinic where the special health care needs of 
women with disabilities will be addressed. 

The clinic will offer comprehensive gynecological 
care that includes obstetrical and high risk preg- 
nancy services, family planning, mammogram 
referrals, parenting support, peer counseling, and 
psychological services involving sexuality and 
body image. In addition, the clinic will also serve 
as a forum where we can encourage the medical 
community to research issues that we find espe- 
cially important such as ways to safely reduce pre- 
menstrual or menopausal stress in women with 
head injuries, or ways to reduce the risk of 
osteoporosis in women with arthritis. 

For deaf women coming to the clinic, signers will 
be available. For mobility impaired women, there 
is an accessible examining table that allows inde- 
pendent transfers from wheelchairs, as well as 
independent access for the ambulatory disabled. 

Among the benefits the clinic has to offer us, there 
is a contagious enthusiasm over the prospect of 
going into a medical facility where we are not 
patronized or overlooked. Rather, the clinic will be 
a place where we are treated with the compassion 
and expertise of a multidisciplinary staff with 
whom we are working in partnership. 

It is our hope that in time our attitudes and prac- 
tices will spread beyond the rehabilitation setting 
to the general field of gynecology. 

Editor's Note: 

For further information on the clinic contact Dr. 
Kristie Kirschner at 312/908-4744 or Dr. Suzan 
Rayner at 312/980-7230. 



-i »*„,, mn-t and communication 

1 May 1991 service 

Dear friends of Isis, 

Our Isis International team in Manila joyously announces the opening of its office 
and facilities at #85-A East Maya St., Philamlife Homes, Quezon City, Philippines. 
We request your organization to mark the occasion by converging your 
consciousness with ours as we we go through our, women's ritual of opening toward 
the energizing of women's cause all over the world. 

We realize our team's limitation in time and place and current capability to enable all 
possible women and each existing women's or women supportive organization to 
join us on this occasion. This limitation, however, does not stop us from reaching out 
far and wide - east to west, south to north, east to east, south to south - to each 
and all and from declaring our will and commitment to learn about and work for 
women's empowerment across classes, races, ethnicities, and cultures. 

We know we have much to do and relocating in Manila provides us with a diversity 
of opportunities and dynamism for forward movement. We therefore look forward to 
the vibrant internetworking of our existing relationships and the nurturant 
development of new ones. 

May we await your linking minds with us at Isis International in Manila? You can ring 
or send us facsimile messages for queries, greetings, services, or proposals for 
collaborative work. Or you can drop by and visit us any time. In any case, we will 
love to hear from you. 

Yours in women's solidarity and work, 

la, Utaimm Awia- hwnwnh$\ Tuanim %om\ Warn Mm mamanvxam,, uhw', Ana IHahia, Iwrwrvp-', a Jtuda, (Pama, Jim&n, 

- Board of Trustees 

la, wwwi, Abaa-hojwnwm, Jjvmh, AnMan, (jomm AwHu, CwJu, wwduuam,, wd CculaaaaA, jwMk CaJuma, turn 
Ctslolwva, (EaMKiAa, bowMiaA, ulanim Xa/X, Cwamh Im^-lUaMimm, Awmia, Jam,, a Lma, (ravia, Jimtyn, - ISJS 

International Manila Team 

Isis International — 85-A East Maya St., Philamlife Homes, Quezon City, PHILIPPINES 
Tel. No. (632) 993292 Fax. No. (632) 997512 



Thinking About Disability 

If you have read this far, you have learned some- 
thing about the inner life and outer challenges 
faced by persons with serious physical limitations. 
Have you gotten past the fear and avoidance that 
so many people experience in the presence of 
disability? Why is it that the sight of disability is 
so troubling to the "non-disabled"? Sheer terror, 
that's what. Knowledge that "there but the grace of 
God go I." Any of us, at any moment can be 
suddenly changed, from a graceful high-diver in 
the perfect curving moment, a breathlessly racing 
downhill skier, a dashing motorcyclist, a sleeping 
camper — to a coma, a wheelchair, months or 
years of rehabilitation, a life script and landscape 
forever changed. Does the thought scare you? 
Make you nervous? Welcome to the human 
condition, where the central fact is uncertainty! In 
attending to our sisters whose stories are here in 
this issues, we can feel gratitude, for they have 
assured us that such blows need not be the end of 
the world, for they have shown us how they came 

Did you notice the quotes around "non-disabled" 
in the paragraph above? Who indeed are they? A 
few more questions to ponder: Who is blind? (the 
person who cannot see the growing numbers of 
homeless women and children? the person who 
cannot see someone with a cane, walker, or wheel- 
chair, vainly signaling for a taxi?) Who is deaf? 
(the person who cannot hear the cries in the night 
of an abused woman or child in the house or 
apartment next door?) Who is crippled? (the 
person so hampered and limited by prejudice and 
bigotry that another human being is not greeted as 

» fully human?) Who is brain damaged? (the person 
who is so lacking in imagination that the first step 
in moral consciousness — the awareness that 
others live in the exact center of a universe, just 
like you! — has yet to be taken?) I hope the stories 
in this issue will bring you a gift, a link to another 
reality, and therefore an expansion of your and 
our humanity. 

TCW Goes to the Movies 

On reading the film critics' reviews of films we've 
seen, we often ask "Did we see the same movie?" 
Did we draw a different meaning?, or Did we see 
something others missed? If TCW readers have a 
similar experience, will someone please come 
forward to write feminist film review for this 
magazine? Here are a few cases in point. 

Cinderella Reversed 

The story and cast of "Pretty Woman" is set up to 
prepare us for the Cinderella ending; Prince 
Charming, rich and handsome, even comes mythi- 
cally on his white charger to rescue the poor 
wayward street urchin. But she is the one who 
rescues him\ She is the one with integrity, who 
saves him from his greedy, exploitative, non- 
productive life by comparing his buy-out/take- 
over schemes to a "chop shop", a racket that steals 
cars to dismantle them for their spare parts. And 
in case anyone misses the point, at the film's end, 
when he asks her, "After Prince Charming come to 
rescue her, what happens next?" and she replies, 
"She rescues him right back," this satisfying twist 
make s "Pretty Woman" a feminist as well as an 
entertaining movie. Cinderella rescues Prince 

An Act of Cultural Restoration 

In her scathing, personally vicious New Yorker 
review, the reviewer commits the major fallacy of 
criticism: to disparage a work from an antagonistic 
point of view, criticizing it for something it did not 
intend to do, That was not a "pet wolf," Pauline! 
In "Dances With Wolves," the wolf is a messen- 
ger/guide from the spirit world, in keeping with 
the religion of the Native American for whom all 
manifestations of creation are enlivened and 
inspirited. Quite apart from any aesthetic consid- 
erations, this film is an act of cultural restoration, 
restoring dignity and identity to a people whose 
culture has been brutally ripped from them, 
whose images of themselves have been degraded 
stereotypes, or (even if sympathetic) played by Sal 
Mineo or Jeff Chandler. Oglala Sioux go to see 
"Dances With Wolves" over and over again, 

reveling in the sound of their Lakota language, 
spoken beautifully and accurately by Native 
Olgala Sioux actors: the first film to have their 
speech accompanied by English sub-titles. To take 
issue with it based on a prejudice against "New 
Age" ideas is to miss the point; Uncle Tom 's Cabin 
was not the greatest American literary work, but it 
raised the consciousness of a nation. The Ameri- 
can mind at this moment in history is in desperate 
need of learning, and being reminded of, the 
teachings and wisdom of native peoples: ecologi- 
cal awareness, closeness to nature, reverence, 
decision by consensus, harmony and balance. 
When seen in this light "Dances" makes a ground- 
breaking contribution to this task and thus to our 

Freedom found outside the law. 

Gide, Twain and Mailer, among other male writ- 
ers, have proclaimed the peculiar kind of exhila- 
rating freedom that comes suddenly to the crimi- 
nal on the run; at a certain point, the law- breaker 
realizes that there is nothing to lose, that all norms 
and conventions have been breached, and that 
therefore one is totally unbound, and that any- 
thing is possible and anything is permitted. 
American movies have long enjoyed playing with 
this idea, in the gangster film, the "buddy" film, 
the "road" film, most memorably epitomized in 
"Butch Cassidy and the Sundance Kid." Women 
have been excluded from this genre until "Thelma 
and Louise," a movie that makes women smile 
with recognition, wince in memory, laugh in envy; 
and makes some men sweat in nervousness. 
Women outside the law?! good women? a smart, 
kind waitress and a suppressed, chaste little 
housewife? attractive, likeable women, talking 
back, shooting back, hitting the road (to 
Mexico... where else?) and discovering total, 
glorious freedom for the first time in their lives. 
And the ending (out of four or so possible sce- 
narios) is the only one that fits and feels right to 
this enthralled watcher of the screen. 


Go and treat yourself to three hours in a trance 
state inside the mind and soul of Janet Frame, 
New Zealand writer and poet whose autobiogra- 
phy is playing as "Angel at My Table." Unlike the 
Hollywood technique, which hits you over the 
head, this woman-written, woman-directed, 
woman-produced masterpiece is subtle and 
indirect. We live an extraordinary life from within 
her consciousness, the camera lingering over all 
objects and vistas which capture Frame's attention, 
without voice-over narrative: none is needed. 
With a growing identification, we respond, with 
her in an almost literary way, from her infancy 
and early childhood through the traumas of 
poverty, school days, college, misdiagnosis and 
shock treatment, travels, a summer of love, to her 
realization of her gifts as a writer. Typical of an 
extraordinarily gifted child, Janet does not under- 
stand what it is about herself that makes her so 
different from others, and feels alienated, lonely, 
always outside and isolated. But she lets us in once 
or twice, for a glimpse of her creative process. Like 
many, she writes to comfort herself, as she says, 
for catharsis; she also creates as the truest expres- 
sion of her deepest self, in concentrated joy, often 
inspired by the melodies of classical music or the 
beat of rock. This exquisite film will haunt you for 
days to come. In the final scene, Frame is sitting in 
her tiny tear-drop trailer, which is ablaze in the 
night as a metaphor for her luminous spirit, 
leaning over her typewriter, stuck; suddenly she 
dashes outdoors and leaps to the beat of the dance 
music coming from somewhere, dashes back 
inside, and types again, murmuring 
"hush.. .hush.. .hush..." and we leave the theatre 
knowing that all is well, and all will be well, and 
all manner of things will be well. 




The following are available for $5 each: 

Vol. 1, No. 4 Women in Science 

Vol. 2, No. 4 Feminist Criticism 

Vol. 3, No. 2 Year of the Child 

Vol. 3, No. 3 Women Sailing 

Vol. 4, No. 1 Energy in Living Systems 

Vol. 4, No. 2 The Coming of Age 

Vol. 4, No. 4 Women in the Wilderness 

Vol. 5, No. 2 Third World Women 

Vol. 6, No. 2 Women in Law 

Vol. 6, No. 3 Men Changing 

Vol. 6, No. 4 The Goddess 

Vol. 7, No. 1 Poetry 

Vol. 7, No. 2 Performing Arts 

Vol. 7, No. 4 Women of China 

Vol. 8, No. 1 Women as Healers 

Vol. 8, No. 2 Belles Lettres 

Vol. 8, No. 3 American Indian Women 

Vol. 8, No. 4 New Voices (Susan Griffin) 

Vol. 9, No. 1 Pentimento (Barbara Wallston) 

Vol. 9, No. 2 Women of Israel: Jewish and 


Vol. 9, No. 3 Women in Management 

Vol. 9, No. 4 Photography 

Vol.10, No. 1 Toward Planethood 

Vol.10, No. 2 Soviet Women 

Vol.10, No. 3 GAIA: The Living Planet 

Vol.10, No. 4 Life Stories 

Vol.11, No. 1 Men and Birth 


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